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Cerebellar Stroke - experience/treatment/recovery
Stroke & Cerebrovascular Diseases | Last Active: May 5 11:27pm | Replies (515)Comment receiving replies
Many of you have talked about your experiences with cerebellar stroke and therapy following it. It would be great to hear an update from you, which I believe will be helpful and encouraging to other members in this discussion.
@strokesurvivordynamo - wondering if you are still doing the therapy exercises and how you are doing lately?
@maryar - how is the spasticity you were experiencing? Are you still doing the puzzles and word searches?
@elizabethmm - how are your headaches and the difficulties you were having reading? Did you and your cardiologist see any useful results from the one-month monitor you had?
Replies to "Many of you have talked about your experiences with cerebellar stroke and therapy following it. It..."
A bit late with the reply but happy to update. My stroke was 6.5 yrs ago (Dec 2015). A NeuroPsych Assessment in spring 2018 confirmed my cognitive difficulties with memory and executive function. It felt very validating to have those results. I’m 80% like the old me, but if we just met you might not even notice my struggles.
I’ve gotten very good at using compensatory strategies and having a better handle on managing my cognitive load to conserve energy.
In March 2021 I sustained a minor knock to the noggin but because I’d had 3 bad fall in the 15 months prior (one that left me with 2 tears to my rotator cuff), that little knock resulted in a serious concussion. It took me out of work for 8-months and back into Vision Retraining Therapy. I can’t say enough good things about the vision therapy - truly a life saver. After 7-months of therapy I was doing a gradual return to work and after 8 weeks was back to regular hours. Worth noting this recovery was as hard or harder than my initial stroke recovery - it really set me back.
Continuing to be comfortable with being uncomfortable has helped me sustain continued improvement.
I’ve chosen to focus my energy on using my story to positively impact health outcomes for others. I am a volunteer at the national level with the Canadian Heart & Stroke Foundation.
In 2019 I was an invited plenary panelist at Canadian Stroke Congress, (https://m.youtube.com/watch?v=m0NI4LAN5ec) and that same year my stroke journey was published by the Ontario Brain Injury Association magazine (OBIA Review).
In 2020 my story was published by the American Stroke Association (Stroke Connection Magazine). Then in 2021 I was a speaker at the Canadian Women's Heart Health Summit (https://m.youtube.com/watch?v=lw3s9ae-AYM).
I’ve been part of several advisory groups and working teams over the last few years. I was invited to contribute my stroke story to a book, along-side others, and it was published in 2021 (Not Your Dad’s Stroke ISBN: 9781039119109)
Honoured to share that in I was invited to be on the Community Consultation & Review Panel for Canadian Stroke Best Practices Recommendations Virtual Stroke Rehabilitation module, recently released: bit.ly/3NymlAm
I continue to volunteer for research opportunities to participate as a stroke survivor, and have recently been asked to be a patient partner on a research grant which I hope gets funded.
Wishing others continued recovery. Becoming involved and advocating for improvements to stroke care for patients (that come after me), has been very rewarding for me.
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My dizziness turned into full blown “ Syncope “ I had 3 complete Fainting episodes in the last few months! The Cardio Monitor did not show anything of Significance as my Cardio says, even when my heart rate goes way over 90 I’m still in sinus rhythm which I don’t quite understand.. he now talks about an Insertion of a Loop Monitor but I’m thinking this through... still have severe dizziness.