Statuesque
Apr. 17th, 2013 10:04 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png)
And here is the thing about mild spastic ataxic hemiplegic cerebral palsy that I don't normally talk about, since it is kind of horrifying.
See, earlier in the evening, I'd had a second small seizure that caused my entire body to tense up, spasm, flail, and twist. It was over in seconds... but it had triggered a spastic hemiplegia "flare" that turned my entire left side into a "ghost" - I could barely feel anything on that side, I couldn't move my arm or leg at all, and I had to actively speak to myself to give orders. "Brain, open the left hand. Brain, straighten the left leg." My face was affected, my eye was affected, the left side of my mouth was affected. I could speak, but with a mild slur. The muscles on the left side of my face would twitch and then clench before barely relaxing. Adam massaged me and held my hands and comforted me while I let it all happen. We conversed about the general problems in my specific case of left side spastic ataxic hypertonia hemiparetic mild hemiplegic cerebral palsy - since each patient is much different. The concept of "When it stops" turned into "If it stops" - which was part of the terror. It did stop, during the "Darmok" episode of Star Trek The Next Generation. I finally forced myself to limp upstairs and take muscle relaxants. I am only just now able to stretch, three hours later.
I know there maybe be people with cerebral palsy who will want to "compare" their symptoms and sensations and lack of sensation, and there may be people who care for people with cerebral palsy who will want to "compare" their patients' symptoms and sensations and lack of sensations. But I don't really want to hear that right now. This is just something I needed to get out. I don't know many people without cerebral palsy can really really get it. The exquisite agony as sensation slowly returns, and then the ecstatic joy of actual feeling and movement. I don't know how similar it is to any other sort of -plegic condition. I know nothing except my own experiences. But see, if you are ever with me, and my body goes through a serious of spastic twitching flailing movements, be prepared for my left side to drag, to barely move, to generally be so tense and clenched that my muscles are like stone. Fibromyalgia flares may certainly follow. Such as the one I am in right now.
I only write this to recall, recollect, understand my own self and what I go through in these moments, these "flare" of a sort. In every "regular" moment, every day, all day, my left side is tense, clenched, prone to small spasms. But during "flares" triggered by epilepsy, fatigue, physical excitement, emotional excitement... those moments are scary and filled with strange creepy moments. I know other sufferers have such moments happen. I know each sufferer is different no matter how similar the symptoms are. If I don't write down what I personally experience in my own body, I may not remember for next time.
This, in fact, may be a first entry in a sort of "memory journal" if that is what it takes to recall and recognize and understand myself.
See, earlier in the evening, I'd had a second small seizure that caused my entire body to tense up, spasm, flail, and twist. It was over in seconds... but it had triggered a spastic hemiplegia "flare" that turned my entire left side into a "ghost" - I could barely feel anything on that side, I couldn't move my arm or leg at all, and I had to actively speak to myself to give orders. "Brain, open the left hand. Brain, straighten the left leg." My face was affected, my eye was affected, the left side of my mouth was affected. I could speak, but with a mild slur. The muscles on the left side of my face would twitch and then clench before barely relaxing. Adam massaged me and held my hands and comforted me while I let it all happen. We conversed about the general problems in my specific case of left side spastic ataxic hypertonia hemiparetic mild hemiplegic cerebral palsy - since each patient is much different. The concept of "When it stops" turned into "If it stops" - which was part of the terror. It did stop, during the "Darmok" episode of Star Trek The Next Generation. I finally forced myself to limp upstairs and take muscle relaxants. I am only just now able to stretch, three hours later.
I know there maybe be people with cerebral palsy who will want to "compare" their symptoms and sensations and lack of sensation, and there may be people who care for people with cerebral palsy who will want to "compare" their patients' symptoms and sensations and lack of sensations. But I don't really want to hear that right now. This is just something I needed to get out. I don't know many people without cerebral palsy can really really get it. The exquisite agony as sensation slowly returns, and then the ecstatic joy of actual feeling and movement. I don't know how similar it is to any other sort of -plegic condition. I know nothing except my own experiences. But see, if you are ever with me, and my body goes through a serious of spastic twitching flailing movements, be prepared for my left side to drag, to barely move, to generally be so tense and clenched that my muscles are like stone. Fibromyalgia flares may certainly follow. Such as the one I am in right now.
I only write this to recall, recollect, understand my own self and what I go through in these moments, these "flare" of a sort. In every "regular" moment, every day, all day, my left side is tense, clenched, prone to small spasms. But during "flares" triggered by epilepsy, fatigue, physical excitement, emotional excitement... those moments are scary and filled with strange creepy moments. I know other sufferers have such moments happen. I know each sufferer is different no matter how similar the symptoms are. If I don't write down what I personally experience in my own body, I may not remember for next time.
This, in fact, may be a first entry in a sort of "memory journal" if that is what it takes to recall and recognize and understand myself.