Riding Onwards After a Stroke
Life is like riding a bicycle. To keep a balance you must keep moving forward. -Albert Einstein
You plan and god laughs, they say.
I’ve always thought this saying is quite funny in a dark way, until I found myself in the hospital in an intensive care unit after having a life-threatening stroke from a tear in my artery (aka carotid dissection). Doctors called this a “left ICA dissection & M1 occlusion/L MCA stroke syndrome treated with thrombectomy”. It’s a mouthful. Say goodbye to my summer plans of adventure!
After a few years of things being shut down to COVID, the summer was wide open with adventure. My friend Julia and I had plans to do a brand new SwimRun race in Vancouver (13 km run around AND swim through Sasamat Lake), the Vancouver Open Water Swim Association (VOWSA) races (including the Canada Day Challenge at Sasamat Lake and Kits Challenge at Jericho Beach), and, finally, culminating in the Vancouver Triathlon on September 5 (a beautiful ocean swim, a cycling course though Stanley Park, and run through English Bay).
March 2022 started with the first outdoor triathlon of the year in BC, the UBC Triathlon. Since this was the first one of the season, I was eager to do it despite a very intense headache that I’d had for nearly two weeks at that point. Looking back, I’m not sure why I chose to do the triathlon with such a monstrous headache. Did I want to push myself? No doubt. That can be a problem for me.
This intense headache was the start of a tear in my carotid artery that would lead to a stroke, and would see me in the hospital one week later unable to speak, write, stand, walk, think, and move my right side.
I sometimes think about what would’ve happened if the stroke hit in the triathlon. When a stroke hits, every minute counts! I’m very grateful to my husband for phoning 911 immediately when I stumbled down the stairs, speaking nonsense. Strokes hit your brain from nowhere.
Two months after the stroke
I was very fortunate to work with an amazing and dedicated group of physiotherapists, speech pathologists, occupational therapists, and recreational therapists at G.F. Strong Rehabilitation Centre, British Columbia’s largest centre focused on Acquired Brain Injury, Spinal Cord Injury, Arthritis and Neuromusculoskeletal issues. Recovering from a stroke is really tough as you are affected by a combo of physical, sensory, and cognitive impairments all together. The team-based approach uses specialists whose knowledge in different areas goes a long way in helping a patient recover as much as possible.
After two months of intensive post-stroke recovery, the physiotherapists and I decided it was time to learn to ride a bike again. I had been using a stationary bike at the Rehabilitation Centre for a month, and according to the Community Balance and Mobility Scale that the physiotherapists used to evaluate the balance of stroke patients, I was able to walk with improved balance, stability, coordination and proprioception (aka your body’s ability to sense movement, action, and location) in my right leg.
The process to get on a bike is quite complex given that a stroke deals with a combination of motor, sensory, and cognitive impairments. At the time, I didn’t truly realize how much it would take me to get me onto a bike once my right leg had better balance, stability, and coordination. I assumed the work we’d done on a stationary bike had prepared me for riding a moving bike. “I’ve been on a bike in the triathlon just before the stroke, should be fine!”, I thought foolishly.
You plan and god laughs.
My physiotherapist, Ryan, had other plans for me which included indoor and outdoor cycling assessments covering “safe mounting/dismounting, visual scanning and shoulder checking, anticipatory and reactive braking, gear management, steering, and hand signalling” in a series of steps. I’d have to go from working on the indoor bike trainer, to working on a (moving) bike in the gym, to a short track outside, on the road led by Ryan, and then, finally, one mapped out and led by me. For each step, I would need to prove I could master each of the cognitive, physical, and motor skills needed before I could progress on.
Onto the indoor bike trainer
Our first day Ryan started by having me on the indoor bike trainer for 20 minutes. I was wiggly in getting on it, somewhat shaky. Once on, I explored by trying out the gears to figure out my pedalling rate (my cadence) and my speed. The plan was to see how long I could hold my pace using the Rating of Perceived Exertion (RPE) Scale at five or six, which is moderate activity where you can hold a short conversation. Once on the bike, I could handle that at five or six without challenge, so onwards we went.
Around the gym
Next up was to test out a moving bike, which presents bigger challenges as it deals with a combination of physical and cognitive skills needed to ride. We moved to working on the bike in circles around the gym at the Rehabilitation Centre. The centre has a number of different types of bikes you can choose from. Ryan suggested a blue hybrid (or commuter) bike, something like my own with flat bars and thicker tires. We tested out the seat. I borrowed a helmet which was hard to put on, a sad realization of how my right hand didn’t work as I struggled with clipping it on. “Hemiparesis”, they call it: a weakness of one entire side of the body.
I got on the bike … and felt like a total failure! I had trouble coordinating movements which are key in riding a bike. Right away, Ryan noticed that my right foot was placed incorrectly on the pedal, hanging off the front. We took some time to place the foot correctly.
The weakness in my right hand became a challenge as the right hand controls the rear brake — if you try to stop using only the left-hand brake, you’ll go over the handlebars if you have to stop quickly. You have to make sure you have it in control. Ryan was quite clear that I couldn’t go on the road until I got the handle of the right brakes and currently, I couldn’t firmly and consistently grip the brake. As I rode around the gym, my right hand slowly but surely released the brake without me noticing.
I got off the bike and we continued working on my hand doing a series of Grasp and Release activities, including getting my right hand to be able to grasp and release a tennis ball in the same motion as on a brake.
I did this daily for a few days to get comfortable and when I went back on the bike, my right hand had slowly picked up the motion and I was able to grip the brake. As always, neuroplasticity was the key that allowed my brain to re-develop and re-learn motions again. The neurons start firing to pick up where the others were lost in the stroke, or, as the Canadian neuropsychologist Dr. Donald Hebb has famously said, “Neurons that fire together, wire together”.
Once Ryan could consistently trust that my right hand would respond to the right brake, the next step was continuing with “stop and go” motions, on-command. Now we added things to try to replicate the road sense I would need before we progressed: having to look at something to the left or right side while I steered around the corner, seeing how quickly I could apply the brakes while fixing on points in the distance, and turning my head to look at him as I went in circles around the gym while Ryan periodically gave me the stop command. It was quite challenging. Could I function the brakes ok? Did it take me a while to activate the brakes? How quickly could I stop? We did this for several days while I got used to it, over and over and over.
Cognitively challenging
After I could handle looking away while the bike moved forward, we moved on to further cognitive challenges. One rainy day when we couldn’t go outside, we worked on activities specifically designed for a brain that is dealing with aphasia (problems with language and comprehension) and the loss of working memory due to a stroke.
In this step, Ryan would throw the ball to me so I could practice using my right hand, and I would throw it back. Standard ball throwing practice. However, in this step each time I threw the ball, I had to come up with a geographical term starting with the letter “C”. I was able to come up with Calgary, which is the city I grew up in. After that, I couldn’t get a single place to come to mind. Canada? California? Chicago? Croatia? Nothing.
There was me staring at him, unable to say a word, as the ball went back and forth between us.
We tried again with the letter “D”, using any term. It is wild to me that my brain, so full of words, could not call out any. I was able to come up with “dog”, then “digging” came up for the next throw of the ball and that was it. Nothing. The ball kept going back-and-forth. Silence. It was good that I had access to Julia, a talented speech pathologist at G.F. Strong Rehabilitation Centre, three times a week!
A step outside
Our next step was outside to the small 8-shape training path, built by G.F. Strong Rehabilitation Centre for people using wheelchairs, bikes, or other assistive devices to practice. This was a big move for me as it was the first time I went outside on the bike.
I had to start by doing quick starts and stops around the path, testing my speed and my ability to use the right hand brake. Ryan needed to be certain that I could accurately grab the right brake before letting me go onto the road. If I could only use the left one and I had to stop quickly, I could flip over the handlebars. Fortunately, my hand continued to cooperate due to the work we had done using a series of Grasp and Release activities. Neuroplasticity!
Next, we practiced by using hand signals that are essential on a bike.
The signals are done by moving your left arm in different ways to indicate right turn, left turn, and stops. These proved a challenge! Somehow my brain kept mixing right turn from stop, and when it was time to turn I couldn’t decide up or down despite using these signals for years. Ryan suggested that I could use the alternative right hand signal to indicate going right rather than using my left hand pointing up. This made more sense to my stroke-frazzled brain as I could point to the direction where I was going.
When Ryan thought I was ready, he presented me with a map of the route he had planned for us. I had to study it so that I could get used to the roads, stop signs, hills, and turns.
On the road!
Finally, it was time to hit the road. The sheer pleasure of leaving the rehabilitation centre, getting on a bike, and heading out on the road after a stroke is something I will never forget. Exhilarating and amazing that I can be moving outside on a bike as two months ago I couldn’t walk around without help. It is magical to think the brain can recover due to neuroplasticity and I think about this a lot these days. Neuroscientist Santiago Ramon y Cajal proposed in 1889 the radical idea of billions of separate nerve cells, the “overarching notion that the brain is not a seamless web of wiring, but it is instead composed of distinct and anatomically separate processing units, or neurons”.
Ryan led us to the road and we were off! The first road was quiet and residential. We approached Cambie Street, the first busy one. Initially, I was scared of cars. “How can you be sure they will stop?” I thought. It seemed very trusting. The world held far more fear than before the stroke.
For this segment, Ryan rode along beside me to assess my road sense and my ability to:
- Look left and right
- Look out for cars in front, to the side, and behind
- Watch out for pedestrians
- Handle the gears
- Handle brakes
- Shoulder checking for traffic before signalling a turn
- Do hand signals for right/stop/left
The next time, we did the same route but I led it. Navigating cognitive skills and peddling can be tricky for someone post-stroke. It became more complex for my brain as I had to give direction to Ryan as he followed, narrating as if he was someone new to town that didn’t know the route. “We’re turning left here.” “There’s a stop sign coming up.” “Car on the left.” “A speed bump on the road.” “A pedestrian up ahead.” “Four ducks crossing the road!” all while managing to steer the bike and avoid cars, pedestrians, and anything that stumbled upon our path.
Narrating the route was especially tricky due to aphasia. Each sentence was slow, awkward, and stumbling. Numbers were a particular challenge for me, so when we got to the street we were planning to turn, I had to make sure I had the right number. “Turn right on 37th Street” sounds easy to say, less easy when you’re dealing with aphasia which makes the numbers come all wrong. Turn on 57th Street? Ryan would repeat, quizzically. I would stumble again, try to get the number right before we got to the turn. 37th Street. 37th Street.
Altogether, we worked on four routes over three weeks. Two were led by Ryan, and two by me with each one being progressively longer. He led the first one and I would take over. For each route, I was given the map the day before so I could go over and get used to the streets.
The final test
For the final skill test, Ryan had me plan a 15 km trip to take over 45–60 minutes. I used Strava, the physical exercise tracker/social media for athletes, to plan out a map. While this seems easy if your fingers are functioning correctly, manipulating a map on a phone is challenging after a stroke. My right hand didn’t work very well on a screen to pinch and expand the map. To deal with this, Ryan showed me some exercises to improve my hand strength and dexterity using finger putty. I was also lucky to to be working with Morio, an Occupational Therapist, to restore the sensory feeling in my fingers and hands. I call him The Magician.
Here is the map I planned using Strava:
The route was 15km, twice as long as the ones that we had done previously. It included 4 sections, 1), a section of our previous route as a warm up, 2), a segment that is part of my bike ride to work (just to remember the good times), 3), down the lovely Arbutus Greenway, and then 4), down 29th Street back to G.F. Strong Rehabilitation Centre. For simplicity, I didn’t include challenging twists and turns on the route. Straight lines were best.
Building on all that we had developed over the past month, I was able to grip the right brake, signal and use road sense all while taking Ryan down a new route that included construction and unexpected road detours. My language had continued to improve through my work with the speech pathologist, Julia, so I could chat with Ryan about local bike rides, hiking, and the long-ago travels on a bike with my husband throughout Europe and down the coast to California, all while narrating the route.
It felt so good to have some semblance of normal in my life again. The brain is a marvel!
Postscript:
I was able to give my Vancouver Triathlon registration to a friend and I rode my bike (6 months post-stroke) to cheer her on. She did great! I continue to ride most places in the city, thanking Ryan, Julia, and Morio each and every time I get on a bike. I’m encouraged by this article which talks about how cycling stimulates the central nervous system and cerebral cortex which leads to improved coordination, motor learning, and balance and can help stimulate neuroplasticity in the brain. Exercise is so, so important.
I’m happy to be alive, with deep and heartfelt thanks to the medical team: nurses, neurologists, neuroradiologists, physiatrists (=Physical Medicine and Rehabilitation doctor, a new word for me), and the whole team at G.F. Strong Rehabilitation Centre: physiotherapists, speech pathologists, occupational therapists, social workers, and recreational therapists.
