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2 days ago · Cerebellar Stroke - experience/treatment/recovery in Stroke & Cerebrovascular Diseases

Hello there!

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:

http://strokeconnection.strokeassociation.org/Winter-2020/Finding-My-Own-Way/

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:

https://medium.com/humans-of-paramedic-services/gratitude-on-the-road-to-recovery-a-stroke-survivors-journey-ce8b8cd391aa

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!

Sharon

PS – @colleenyoung I'm not sure how to flag this for others to see it. Your help would be welcome. Thanks so much!

Feb 26, 2018 · Help: I want more information about stroke rehab in Stroke & Cerebrovascular Diseases

Hi Mary,

Glad you came here as a resource. I had my cerebellar stroke in Dec 2015 (clot not a bleed). I had physio at home weekly for 2 months when I wasn't allowed to drive. After those 2 months, I continued with the same therapy exercises for months on my own with a family member supervising as I continued to improve. I don't have physical symptoms like yours (my issue had been balance and is better) but in other groups I belong to, therapy seems to be the answer to regaining (hopefully, no guarantees) feeling/control.

It is true that every person is different with both their symptoms and their recovery. I found that very frustrating to hear and it sounds like you've been told the same thing. There doesn't seem to be a straight answer because it all depends on where the damage is in the brain and how severe it is.

I would suggest reaching out to your local Heart and Stroke office for more information on what to expect. I'm assuming you are in the US (I'm in a Canada) so I'm not sure what other resources you have available to you.

What kept me positive was an attitude of gratitude. For the first whole year after my stroke I tweeted about something I was grateful for each day. It kept the focus on positive things. I have read many stories about people feeling discouraged and struggling with depression after a stroke. Keep your focus positive to help avoid that. Sounds so simple but really is proven to work.

Good luck with your recovery.

Feb 5, 2018 · Cerebellar Stroke - experience/treatment/recovery in Stroke & Cerebrovascular Diseases

My Neurologist told me that my head and shoulders tighten because of Nystagmus in my eye – my head and shoulders are trying to hold my world in focus. I get a humming sound in my ears (sounds like the recycled air noise on an airplace) before the headache begins.

I have to shorten the amount of time I go out shopping and I used to love heading to outlet malls to shop-for-sport for a day. No longer!

it has improved from the early days after my stroke but I can maybe shop for a couple of hours at the mall but not during crazy busy times.

Feb 5, 2018 · Cerebellar Stroke - experience/treatment/recovery in Stroke & Cerebrovascular Diseases

I find shopping overwhelming as well. My Neurologist told me it is called brain flooding – too much to process at one time. It makes me feel like I’ve run a marathan – I get exhausted and I can’t keep my eyes open – need to head home for a nap.

Feb 5, 2018 · Cerebellar Stroke - experience/treatment/recovery in Stroke & Cerebrovascular Diseases

Have you tried Binocular Vision therapy for the Nystagmus with your eyes? Are you working?

Jan 28, 2018 · Cerebellar Stroke - experience/treatment/recovery in Stroke & Cerebrovascular Diseases

Have you tried Binocular Vision Therapy for your vision Nystagmus?

Jan 28, 2018 · Cerebellar Stroke - experience/treatment/recovery in Stroke & Cerebrovascular Diseases

Did you also have a cerebellar stroke? I have cognitive issues only – no physical struggles.