Cerebellar Stroke - experience/treatment/recovery

One of the neurologists I saw had me touch his fingertip with my fingertip as he moved his hand around randomly. When trying to do this with the side that had the stroke, my left, as my finger approached his finger it would start shaking, searching is how the neurologist called it. I do notice that I have a tremor more when tired, but that would be the same as most of my symptoms. There are some Youtube videos describing this better than I can.

Hope this helps.

Thanks I will post once I get done. My understanding is the report will be several weeks after the testing. I will post about the process as well as the results. I have several concerns I hope I can find guidance on. First, Long before my stroke, I had CRPS on my left side. This resulted in nerve damage that is treated by Lyrica. Lyrica can cause some cognitive issues. Secondly my mother had dementia. We are not sure exactly what age she was when she started to get it. She was very good at covering. Lastly, I want to have a benchmark of where I stand cognitively. Then I hope I could always be retested in the future to see if anything is changing for the worst.

@bille

It sounds as if you have some good goals for your appointment and that is important. You can make the most of your appointment time.

Are the cognitive problems your main concern or are there other physical limitations you would like to address?

Mostly cognitive. I do have some physical issues. I have urge incontinence, I still get dizzy if I turn my head, stairs still scare me. The cognitive are more subtle but probably impact my life more than the physical issues. Overall, I am very lucky. The fact that I recovered as well as I have so far was luck. The stroke could have had a far more profound impact on my life. So I know I am lucky, I just wast to get the most recovery that I can.

Hello @bille

Here is a recent discussion on Connect that you might find helpful before your appointment at John Hopkins. It is suggestions for how to get off to a good start with a new specialist. Some of the pointers are really helpful.
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/?pg=1#comment-240765

Thanks. This is a great list.

I'm glad you like it, @bille! It really helps to direct discussions and introductions and gives the patient some control over how to conduct your concerns with a new doctor. I like anything that puts the patient in the driver's seat!

Yep, sounds very similar to how my hand operates. I though I was an odd duck with this condition, but looking up tremor, I see it is a known side effect of cerebellar stroke. Thank you for your response. At no time have I had this insight as to the tremor I deal with daily. I also found out it is not unusual to have this develope weeks and even months after stroke.I have learned something that helps me understand me. Thanks again.

From my reading, people with brain damage experience some anxiety when in places that have a lot going on. Did some research and it was referred to as brain flooding. I guess there is a lot for your brain to process (smells, heat, moisture, sights, etc) and rather than get overwhelmed, the normal brain ignores the inconsequential things and focuses on the things that could cause harm. I read that the brains of people with strokes or other brain injuries can’t selectively process like people without brain injuries and flooding happens. This has led to anxiety and getting light headed in my case. It is much better now, I still get it at times.

So many times since my TBI I have had to leave a store, a social gathering or other public places because I cannot tolerate the noise,the stimuli, the constant changing activity, the lights or too many people talking at once. In a smaller group if a couple of conversations are going on at once I feel like shaking and am too distracted often to follow either group. Then I get angry, really angry.......which others do not deserve, so I don't take it out on them, but sometimes my husband gets it.