← Return to Cerebellar Stroke - experience/treatment/recovery

Discussion
Comment receiving replies
@steveinak

Hi @avmcbellar, I too am sorry to hear of your AVM event. The unanswered questions are certainly frustrating. The brain, I guess, is just so complicated and vast and mysterious, there are just so many unknowns when it comes to stroke recovery. I am glad to hear that you are walking, with and without the aid of a cane. Mobility is certainly paramount to our well being. I did visit an ENT, and an Audiologist after my first stroke (misdiagnosed). I really don't believe I have anything terribly wrong with my vestibular system, save for the brain part. My PT has been great at quizzing me on various problems I have encountered, and whether they are vestibular or neurological. I think you are on the right track with your exercise intervals of just 10 minutes, that is key and it's great you are keeping that up. I am doing just 15 minutes at a moderate level on a stationary bike, and that's enough for me for now. It is frustrating, somewhat, for me because I lead a Spin class at a downtown gym for 8 years (2011-2018). That level of intensity is what I think I should still be able to do, guess I'm not 25 anymore, or 55 for that matter...LOL. I will also mention that I contacted a person here in Anchorage that ran a Stroke Support Group before COVID hit, and she recommended swimming to me, she said it saved her life. So, I grew up in the water in various places down in Texas, so I thought this might be the answer. I went to a local pool that had just opened up from COVID restrictions, and I did 2 laps and thought my head was going to explode. I got out of there and never went back, it was just too much head movement for my brain to deal with. If you have not looked at Brain.Rehab, you might want to give that a try. I got this website from the book, Stroke Rebel, by Linda Radestad. She and her Physical Neurologist started the website to help stroke survivors recover. It does cost $20 a month, but you can check out the website, and view the introductory video for nothing. The site, once you pay to be a subscriber, is mostly just an incredible number of videos of the Neurologist, and sometimes her too, talking about various aspects of stroke recovery. I have gotten some good information out of it, but the number of videos and the way they are organized is a bit overwhelming. You might want to check it out, just Google Brain.Rehab. If you do get a subscription and you decide it's not for you, you can cancel anytime.

Steve

Jump to this post


Replies to "Hi @avmcbellar, I too am sorry to hear of your AVM event. The unanswered questions are..."

Thank you, nice to hear from you Steve @steveinak. You have given me good information to follow up. I will check out the website. By the way, I was 53 when dealing with my AVM. Not only are we lucky to be survivors but we are lucky to also have no cognitive deficits. Our disabilities are purely physical. Hey, I don’t count forgetfulness. It happens occasionally due to aging, right😀? For the most part I have learned to rely on myself for answers. I have looked back since the onset of my AVM and at the timing of my symptoms. It was just last month I discovered the answers my doctors did not provide. Some experts they were. At the time of my AVM, while in the hospital, I did not know what to expect and wanted to learn from my doctors about what was necessary for my recovery. That was 4 years ago. What a disappointment my doctors have been for the recovery period. My PCP has not been able to answer basic questions either. Very frustrating. I am happy to report I have figured things out to finally help myself using online information and my symptoms. I began seeing my PCP last year for annual visits. I will see him next month again. I don’t plan on saying anything because he performs the routine labs which I use for determining my health status. Last year I was concerned with my increased fasting blood sugar. It resulted after my AVM. I asked why? It didn’t make any sense to me when I had been on the Keto diet for the last 4 months. He avoided my question so I got no answer. I will see my next set of results soon to determine my next move.
I am glad to hear you have found a helpful PT in Anchorage. I would imagine it would be difficult to find health care in that area let alone good health care especially with decreased mobility. I can understand swimming being difficult because of positioning the head. Back strokes would involve less head movement. How about standing to do water exercises? Have you found those to help?
I have issues with double vision due to my AVM. I believe proper eyesight is needed along with a healthy vestibular system in order to have balance. Proper eyesight allows for the correct positioning of the head. I have trouble all the time with balance which contributes to my nausea. Keep on being active. I have pushed myself. I believe it helps to regenerate nerve cells. 15 minute intervals is great. I try to do at least an hour on my exercise days. I do less on my off days. Do you exercise daily? Toni