I must say from the beginning, you all made me realize I wasn't crazy, that what happened to me after the stroke, was more or less normal.
My name is Judi, I'm 56 years old. I've been reading all your narratives for a couple of years now. I figure I'm one of the longest survivor here on this board, I had a bleed from my AVM aneurysm in 1969 when I was 21. What follows, is all I can remember or was told at the time.
In 1967, I was in a car accident, which banged my head around a lot, but other than bad headaches I was ok.
I was walking to my parents house in Febuary, 1969, with my 2 small girls, 4 and 5 at that time, I was also pregnant. We were walking over a freeway when my head started hurting real bad, just like my brain was being squeezed. I was still 5 or 6 blocks from their home, had to pass a shopping center and lights, I still don't know how I did it, I was losing my sight and depth perception and must have looked like a drunk. All I knew was I had to get close enough to the house, so the girls would know where they were, when we were, I told them to run get grandma, tell her I was sick and to bring the car. Just as I got to the end of the block, I couldn't go on and started to collapse, my brother caught me, before I hit the ground. He told me to hold on and mom was there soon and as he put me in the car, I said I must have a tumor, as my brain was being squeezed.
I went into a coma then, and that all I remember, till a month later. I do remember my mother saying, they were gonna put a needle in my back and it wouldn't hurt, like hell it didn't. LOL I remember dreams and somehow I knew my other brother was home from Viet Nam, the Red Cross had him sent home for a month, and thats all I remember, till I woke up.
I found out I had an AVM and that the accident, and that I was pregnant, must have caused an aneurysm and that bled. When they did an angiogram, they found the AVM and they made it bleed again, just doing the angiogram. I was paralyzed on my left side and at the time that was all I knew.
We have all figured out that doctors are not God and there is a lot they don't know, they knew even less in'69! The doc said I would remain paralyzed and that I would probably die within 5 years, not a pretty picture for a 21 year old with children. There was no rehab back then, they were gonna put me in a nursing home and do nothing more for me. They said the AVM was in a place that they could not operate and so they were gonna leave it alone and that was that!
I do honestly believe, that because I was so young and had children to raise, alone, that I was bound and determined to walk again. I also wanted to use that bathroom in my room and not a bed pan, that became an obsession. I worked real hard at moving my leg and begged people to walk in slow motion so I could see what they were doing, when we learned as a baby, we had time and as we get older we don't remember the mechanics, we just did it, I learned the mechanics and within a month, lots of sweat and tears went with the learning, but I could walk, with just a heavy limp. I also believe, that because it was my left side, the dumb stupid leg had to follow the right.
My left hand was a different matter altogether, over time and forcing it to do what the right was doing, I do have some flexibility, as long as I concentrate real hard and watch it. I think that by making it do the same thing as the right, I built new neuro pathways, around the damaged area, in my brain, but, I would not trust it to do something, that I'm not concentrating on, like hold a can of soda, while my mind is on other things. After many bruises, I found out that I had lost my left peripheral vision and had seizures.
I still have a headache and as the day goes on it gets bad, so I save the 2 pain pills I'm allowed each day, for bed time. I take Elevial to help me get to sleep. I've very bad depression, but we can't find a pill to help and we've tried them all.
When I was young I didn't know what to expect and nobody else did. They treated me like I was crazy, I couldn't control my emotions. All the crying and the fear, just ate me alive. I even tried to kill myself once, but vowed I'd never do it again. I'm not allowed to drive, so I'm not very independent. I decided, Like Pamela, that I am a DNR person. I told my SO that if I have another stroke I don't want to go to the hospital and let doctors play God again. I also don't want to be another Grandpa Joe.
I've lived with this ticking time bomb a long time and I'm waiting for it to go off again, but not with fear.
I realize there are new things that can be done now, for me? to me?. I found that I truely resented the doctors keeping me alive, whereas 20 years before I'd have died, but they breathed for me and fed me. I am today, what they made me. Although I know its not their fault, I still, after all these years, resent it. I do not go to any doctors, except my neuro, to get new scripts every 6 months. If something happens to this body, I do not want to know. If I get cancer, or have heart disease or anything else, that's just the way it goes. I refuse to live in fear and haven't in 20 years. I guess you can say I've gone beyond DNR.
I'm so very sorry this is such a long narrative, didn't really know I was gonna write so much.