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Cerebellar Stroke - experience/treatment/recovery
Stroke & Cerebrovascular Diseases | Last Active: May 5 11:27pm | Replies (515)Comment receiving replies
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.
Replies to "Ok. So. I feel a book coming on. Lol. If its TL...then DR. Just been thinking..."
I don't know you JMJ but it sounds to me like she's still there. Enjoy every day you have.
Dear TMJLove
I’m responding to your note, because your symptoms are most like mine . Except I’m 75 and that’s way older ... about 15 years ago I stayed with a friend in the Hamptons in LI . Everything seemed fine , I slept on her sofa and wanted to get up to use the bathroom. Well, I couldn’t, everything was spinning, I couldn’t get up . She callled 911 and the Ambulance took me to The Hampton Hospital. After a bunch of tests they found a cavernous malformation on the left side of the brain deep within, never allowing any type of Surgery. I stayed in the Hospital for about a week and could not ambulate. Unfortunately I also have two Cardio issues, I have an MVP and diastolic dysfunction, but no Cardiologist will treat me for heart failure because my ejection rate is still high . In the last year I had 3 falls, out of nowhere I fall . I fell on Cement each time, the Neurologist says “ oh and you had a stroke in your Cerebellum that’s why you feel dizzy all the time . On March 24 th I fell outside a Restaurant after we ate, I’m 5’5 and weigh 145 pounds so I’m not overweight. On Monday I went to my Neurologist she did a Doppler, an MRI and an eeg , everything normal, but my headaches persist and at times I have difficulty reading. Today I saw my Cardiologist, I’ve been with him for 30 years, he put me on a one month monitor and took loads of blood... we shall see, meanwhile I like to show my Gratitude to this Group, May we all heal and enjoy Spring, Thank you for reading this. Lizzy
@jmjlove
I came to this group today for the first time because I had a second brain event thursday. I have been reading since I got here.
Oh Darling, I am sitting here weeping after reading your struggle to find yourself after this earth and life shattering event.
I am crying for you and for me. I am struggling to breathe right now. I am an empath and didn't have my shield up. Ok I am back to myself now.
The depth of your pain is so deep, rarely have I experienced much this in others but I recognize it because that is how deep my own pain WAS because of extreme childhood abuse.
I was also crying because you stated my deepest fears. To lose my life as I know it because of a stroke after all the work of changing the effects of the events of my childhood and taking back my life completely would destroy me or that is my fear anyway.
However, I am a 68 year old woman who choses to be in control of her life. I do it well too. I teach others how to take back their lives also. I think I am going to start a new group titled TAKE YOUR LIFE BACK. Yes, but not today.
I have been on a 33 year journey to erase EVERY EFFECT of my abuse and last year I finished that journey. I mention this because I remember what helped and teach all those skills to others.
I invite you to click on my name and look for a recent post speaking about I AM THE GRACEFUL LIGHT.
I use that when I am feeling my worst, which has been often lately cuz of a multiple sclerosis relapse and other things happening in my life.
When I am the Graceful Light, I stand straighter and do not fall as much because I glide, not walk.
Anyways, for what it is worth, I am with you, sending much caring your way. I am also sending a tiny rainbow. That is yours to keep forever. It has sticky on the back of it so I hope you put it on your sleeve so you can see it move with you. It will give you light. You need that right now.
I invite you to draw a rainbow, post it on the wall in front of you and look at it often. It WILL bring you happiness often and you will get many dumps of good brain chemicals that will bighten your mood. I promise...
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Bright Wings, stick with me baby cuz we are both going to feel better.
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5:19 AM on January 6, 2018. I remember looking at the clock before the room started spinning. Funny how we remember the exact time!