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what it feels like

stroke recovery and post-stroke spasticity: what it feels like

"i've read a great deal about neuroplasticity and i believe it is possible to retrain your brain," says susan brown, who had a stroke in 2020.

by emma jones

jul 29 2022

7 minute read

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stroke recovery and post-stroke spasticity: what it feels like

it took doctors four days to establish that susan brown had an ischemic stroke. supplied

susan brown was a successful musician, teaching by day and playing in different ensembles in her evenings and weekends. one day, when not feeling well, susan left work early to give herself a break. as her symptoms got worse — blurry vision, tingling in her right arm — she called ontario’s non-emergency help line, who told her she was likely having a stroke and had to get to the hospital as soon as possible. over the course of the evening she lost movement in her right arm, and later began to experience a phenomenon called “spasticity”.

spasticity is a common post- stroke symptom where the muscle may become tense or involuntarily contract, according to the american stroke association . over time and without physical therapy, the muscles can become so tight that movement becomes difficult. on top of physical therapy, treatment can also include bracing the affected joint and injections of botulinum toxin (botox), which helps to immobilize parts of the spastic muscle and offers some relief.

brown sat down with healthing to talk about what happened that day, how she stays connected as a musician and why she has so much hope for the future.

this article has been edited for length and clarity.

what happened leading up to your stroke?

i had a stroke on sept. 9, 2020.

i had been working at home, [but] that day i had gone into work because i had to pick up some stuff and i really wasn’t feeling good. i told my boss i had to go home in the middle of the afternoon and between two and five o’clock i went downhill. at five o’clock i phoned the health line and the guy said, “ well, i think you’re having a stroke .” by the time we got to the hospital i was in the middle of having a stroke. so it really came out of nowhere.

what did it feel like?

i took my glasses off because i was having trouble focusing.

i [wasn’t] feeling right. i got home and everything was fine. i walked in my house about 4:30, not feeling good but i still made supper. as the hour progressed, i started losing [feeling] over my right foot, my right hand. by the time we got to the hospital i could lift it only a little bit and by one o’clock in the morning i could lift it not at all.

so by 1 a.m. you were having trouble moving your arm — what happened next?

then i couldn’t move my right side at all. my speech was going downhill too — i think that’s probably what scared me the most. i remember that i couldn’t find words, but i also was having trouble completing whole thoughts. it was like my brain went on holiday.

i didn’t have any surgery because they had to distinguish between whether it was an ischemic stroke or a hemorrhagic stroke. i actually had an ischemic stroke, but it took probably four days to establish that.

how long were you in the hospital?

i was in the hospital for quite a few days. the therapist i saw in the hospital was also working at freeport [a rehabilitation centre] and she recognized that i wasn’t going to get better where i was. she was very helpful in getting me transferred to freeport and i spent from september to november there.

what was it like staying in a rehabilitation hospital?

well, it was in the middle of covid, so i could only have one visitor once a week for one hour and that had to be supervised. it was pretty awful.

i’m so lucky i had an iphone. i was able to get some ear pods and that’s really what got me through. it was very, very hard. and that’s not to say everybody wasn’t trying their best — the nursing staff was very kind, but they had a lot.

[i had] physical therapy an hour a day, which was wonderful, and speech therapy about once or twice a week, and there were exercises to work on outside of that. i had my meals in bed. i was really grateful for the woman in recreation therapy who bought me books or hooked me up with audible library books.

how was the transition back to living at home?

i don’t remember the exact date, it would have to be near the end of november. i was more than ready to go home, but it was a really big responsibility for my husband. i also had people come through the house to make sure it was safe for me [it felt like] a fishbowl.

did you have to make any changes to your house?

we were lucky. we had done a big renovation a couple of years previously and i live in a ranch-style house. you’d almost think i had been preparing for this.

how has the stroke changed your life?

it was very lonely at first, and yet i had lots of people helping us out.

i was not able to use my right leg other than a little bit. i don’t have any [use] of my right arm — my right arm never came back. but, thankfully, most of my speech is back. my rate of speaking is a little bit slower, but not too bad.

i had a job at a church, playing the organ, performing in the handbell choir, and also singing. i also worked during the day at a music school — but i couldn’t do that anymore. i had been teaching music privately, and that was gone.

i also went from being a gym rat to nothing — i was probably in the best shape of my life before i had the stroke.

can you recognize the signs of post stroke spasticity? source: abbvie

how do you manage that change emotionally?

i’m still struggling. i miss the people — but covid had pretty much shut everything down anyways.

my choir was great. they did zoom meetings for weeks and helped me feel connected. i feel very lucky — they did as much as they could. but the reality is that i have changed so much physically that it was a very different world for me.

what are doing for recovery now?

i’m, very gratefully, in an exercise program at the university of waterloo. i see my physiotherapist at freeport privately. and i’m taking music therapy. my big achievement is being able to pull my arm back — i’m still working on going forward.

i am also very grateful to the march of dimes canada — i did the conductive education program , which rehabilitates and educates people who have had a stroke. it was offered through zoom.

what is conductive education therapy?

it is an all-over body workout, which i really needed at that point. the idea is that by repeating movements over and over, your brain will form a new connection to make your muscles work.

what does a day in your life look like?

i get up, i get dressed. today i have a friend for lunch. i’m not the same as i used to be, but it’s something. i do the exercise program on mondays and thursdays, wednesdays i do conductive education on zoom.

you have also been experiencing post-stroke spasticity — what is that?

you know when you get writer’s cramp in your hand? imagine that all the way up your arm, and all the way down your leg. when you see people with their hands curled really tight, that’s spasticity. it doesn’t allow you to move at all. sometimes when i’m walking, i get such bad spasticity in my leg it’ll just cramp up and i can’t take another step, and i have to wait for it to relax before i can move. it’s like your brain is firing at different speeds and your muscles are getting mixed up.

because of the spasticity in my non-working arm and my leg, i get botox treatments, but the results have been mixed — sometimes it works better than other times. [when the spasticity happens] i also take medication to help with it.

but the benefits of exercising will kick in someday — i live with that hope. i’m very grateful to all the people who have worked with me — so many friends and neighbours and [my] husband. all of that support cannot be understated. and my dogs — you can’t really feel sorry for yourself when you’re in front of a dog.

but you are seeing some gains in the mobility in your arm, right?

i have seen in the last little while that i can push my arm out with help and guidance and i can pull it back. that’s huge because two years ago i couldn’t even do that. i’ve read a great deal about neuroplasticity and i believe it is possible to retrain your brain.

norman doidge ‘s book [on healing the brain] was recommended to me when i was in the hospital, and i just devoured it. dr. jill bolte taylor’s book, whole brain living is [another] one. she also had a stroke, and she was able to recover completely. it brings hope.

readers interested in learning more about stroke recover can check out the grand river hospital rehabilitation program (which freeport is a part of) and the march of dimes canada.

emma jones is a multimedia editor with healthing. you can reach her at emjones@postmedia.com or on instagram and twitter @jonesyjourn.

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stroke recovery and post-stroke spasticity: what it feels like