Cerebellar stroke experience, treatment, recovery - want to dialogue

Ok. So. I feel a book coming on. Lol. If its TL...then DR. Just been thinking about my stroke. It will be 3 years in May. I was 57 years young. Was the day before mothers day. Happened around 6:20 am. Was at my kitchen counter and just happened to look at my clock. Being definite on time allowed for getting the TPA shot. Well, that and no bleed. If it helped much, I couldn't say for certain. Other than eyesight issues cleared up rather quickly. The left side experienced ataxia, not so much weakness as a lack of control, still struggling with that.

Anyway, this is not so much about the event, as it is about NOW. I got all the therapy I needed. Considering the size of stroke, and location, cerebellum, recovery was actually pretty good. As of now, most likely, many would not be able to tell. I mean, many people walk with a limp. Many walk with a slight stagger...(but they've been drinking, lol.) Many go out with less than lovely hair. Now that one does bother me.

Still finding my way back to Kansas. Still a bit flat emotionally. Still can't stop the tremor in left side which came well after the tsunami in my head. The tremor is most active when trying to stand still, hold a drink, do my hair, hold anything still. I find my shoulder blade hopping, left side, my leg bouncing, my arm twitching, knee giving out, repeatedly. Getting the @#%$ beads out of the silly putty is STILL a challenge. If I stumble, most likely I fall. Lost the natural reflex that will help regain balance. Gone. Still bite my tongue and cheek. Still can't appreciate a simple thing like a tasty meal. But most grieveous, still feel like an alien in my own skin. And THAT is the worst daily reminder of this life sucking, life altering, life suckin, (oh did I say that already???? Lol.) event.

Where have I gone? The me that felt enthusiasm. The me that enjoyed dinner guests. The me that played baseball with the littles. Drew and colored with them. The me that thrilled with each and every birth on the farm. Celebrated each childs milestones, and each of their childrens' milestones. The me that loved fresh air and exercise. The me that read voraciously, pursued learning because I loved it. The me that put pride and energy into refurbishing furniture, homes, planted huge gardens, canned and planned. Thrilied with a visit from relatives, and to relatives.Yep, that lady. She was so much fun. You might have liked her. Haven't seen her for about 3 years....and I miss her.

I know I have to move on. And I do. But I've changed, and not for the better. Oh no. But still, gotta make the best of life, such as it is. Do others feel this discombobulated? You know, I've never really talked with other stroke survivors. Maybe that's why every time I write a post it's 2 pages long. Maybe. JMJ. Blessings to all.

Exactly! That is why stores/malls are problematic ....too many things to see and too much head turning......yes that is how it is. Therapy has been helpful with head position and eye training.

@hammondm99

I do like what you said, "I'll take the 1000 little wins!" I wish that could be everyone's goal when they are recovering from a trauma!

I haven't had issues with depression, but there were times early on where I got angry. I have a cousin a few years younger than I that had a stroke and that's the first thing he asked me when he stopped by a few days after my stroke to visit, so I'm assuming it is common. To this day, I try to focus on the gains I have made and am still making, keeps my focus on the positive, seems to work for me. I still pick that one thing that is difficult now and work at getting better at it. Once I master that one thing, I chalk it up as another win, keeps my spirits up. Just too much when trying to think about the big picture here with a singular focus of getting back to "normal", I'll take the 1000 little wins!

For me, it has gotten better. I go into rehab mode when I feel this coming on, I start looking at things beside me while walking, food on shelves in the grocery store. the big machines at work, etc. It was tough at first, but I found this worked for me to bring the anxiety down when looking straight ahead. Surprisingly, I can go to concerts or parties and not have an issue.

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.

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.

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.

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!

Thanks. This is a great list.