I kicked this topic off a few years ago and haven't been active on here in a long time (apologies).
By way of an update, I recently shared my updated journey here:
Last year I met the 2 female paramedics that responded to my family's 911 call. I strongly encourage you to do the same! The Region of Waterloo Public Health wrote this article as a result:
In the 4 years post-stroke (left inferior cerebellar CVA Dec 2015) I've seen considerable improvements (mine are all cognitive – I never had any outward signs except when I was tired and would get a little wobbly). I've also engaged in some advocacy work with Heart & Stroke Canada which I've found really rewarding.
I am 100% me on the outside and 80% me cognitively. I had a Neuro Psych Assessment done back in 2018 which validated a lot of the issues I was having. It also confirmed that I am functioning well below my expected capacity, even though for the most part I fall within the low/normal range for the population, failing in a few areas entirely. This was helpful because friends would often say "80% you is like 100% for a normal person like me" and I'd get so frustrated.
Here is what has worked for me in my recovery:
– Binocular Vision testing/retraining to help with visual struggles, jumpy eyes, dizzy, inability to read without getting tired,difficulty reading/understanding, etc.
– Massage therapy monthly to help with headaches (mostly tied to balance and vision issues-suboccipital muscle in particular)
– Proprioception therapy (form of physiotherapy/vestibular therapy) for balance, coordination, stamina, learning where noise is coming from (eyes closed)
– CAP testing for hearing difficulties – if you struggle in noisy environments, can't keep track of conversations, can't keep up with fast speech, etc.
– Constant Therapy app for cognitive improvement – there is a one month free trial
– being comfortable with being uncomfortable – I push myself outside my comfort zone daily to help my brain create new pathways. Rest (when needed) then do it again. Repetition has been good for me. For instance, I couldn't stand being in a coffee shop (my volume is turned up to 10 now and everything is loud and I can't put background noise in the background). So I booked meetings every week in a coffee shop for 30 minutes, I'd put a radio on at work while I was trying to read, all things to challenge my brain to manage the noise. Now, I can tolerate more noise, including Disney World. When I'm cognitively tired before arriving at a restaurant, I will wear earplugs to drown out 33dB of noise. Continuing to challenge my brain has been the biggest step towards improvement for me.
I don't actively participate here anymore. If you're in Canada you can find me on the Heart & Stroke Canada, FB Group "Community of Survivors" – I was part of the initial group of survivors when Heart & Stroke Canada launched this in late 2017, now we have 2,000+ members and it is very active every day (granted you have all types of heart and stroke survivors so it's not specific). Through that group I met (in person) another cerebellar stroke survivor and it was an awesome experience. I'm also on the FB Group "Cerebellar Stroke" – a worldwide group with only 390 members that is hosted/moderated by survivors (not affiliate with an organization at all).
If you're on Twitter you'll find me @SharonDreher
Wishing you all continued recovery as you push for more!
PS – @colleenyoung I'm not sure how to flag this for others to see it. Your help would be welcome. Thanks so much!