Steely Dan
Former Member
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- Dec 22, 2008
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Snoopster--Good questions. I just know what I experience. I have a degenerative central nervous system disease--spinocerebellar ataxia--diagnosed over 6 years ago. Sudden onset. I was perfectly fine one minute and my life flipped upside down the next. It was like a stroke. I have a tremendously difficult time walking or finding my balance. I look totally drunk all the time. I slur my speech and can't find words. I can only communicate fluently through typing. That's the way I communicate with my family now. I can smile and listen but I get upset with my inability to communicate through language. The seizures had an onset about 3 years after the onset of the disease. Those three years were spent looking at the ceiling. Seizures are not extremely common but not rare with any of the ataxias. They can also be co-morbid with MS.
I have about 3 different types. One is a drop seizure...where I hear a sudden and unexpected sound ie a cough or a car horn and I just drop flat to the ground and come to about 30 minutes later. No attempt at protecting myself. Another type are seizures in my sleep where I thrash about and convulse. Another is when I sense an aura and have a full grand-mal type seizure. I'm very very violent and combative. I bite and head bang and break bones. I have been known on several occasions to have these seizures while alone and to wake up hours later or the next day in a strange place--like under a bush or in a dog food bowl or under a cupboard. This disease requires a great deal of humility!! I have no memory of what has transpired but I am commonly found half-way under a wall or a fence or a gate. I seem to have a great desire to "get out". I've had neighbors and family observe hundreds of these seizures and I mutter and cry but I don't converse normally. I don't recognize people or ask questions. I will not take directions but instead have to be physically restrained and directed. I've been asked my name and didn't know it. I will often talk about ridiculous things like I am going to see the cat in the field or act as if I am in a different time of my life. A bit embarrassing but I try very hard to be objective and keep a sense of humor about this as does my family. I'm typically a very put together person and always dressed very nicely but when I seize, my clothes are disshevilled and I have no modesty. I just sense that I would not notice if a shoe was off my foot and reach down and carry it. Heck, I don't even notice if I have my skirt on when I wander out into traffic. I didn't know that I was barefoot when I spent the night under a bush. I always wet myself and bite my tongue and lips to a degree that they bleed quite profusely. My eyes don't focus but they aren't red. There is no way that I could enter a coffee house and order a coffee. I might stumble in and fall on the floor. We know that I can push doors open but I cannot pull them back. I can walk but I also crawl sometimes. Thus, we have all sorts of little tricks to keep me safe. After a seizure, I fall into a deep sleep for about 4-6 hours and make a gradual readjustment to the sense of reality. It's like straightening a room and setting it right again.
That is the one part of Mr. Wheeler's actions that concern me. The sleep is so deep, I can not be roused. It feels deeper than actual sleep. I suppose if he did have some sort of seizure, different from mine, it is possible that he sought warmth in a dumpster and fell into a deep sleep. I know I have no sense of cold or heat. None at all. I can have a seizure, sleep, and be back posting fairly quickly but my baseline of disability stays the same. I still can't talk coherently, make a sandwich or walk without great difficulty. I have to be propped up in bed as I can't support my own weight, even though I'm very petite. After a seizure, I couldn't answer a personal email but I can follow a format of posting. No multi-tasking ever whatsoever. No sudden movements. No noise. No surprises. That's why I now live alone on top of a very quiet mountain and have no visitors--only my husband every few days. I have a small yard with a gate that locks me in and all sorts of safety measures. There's no stove and everything is taped off so I can't tinker with things when out of it. I have restraints that I put on myself in bed so I don't wander at night. We've tried to cut down on the precursors of my seizures and it's been somewhat successful. I'm still here and have many many blessings and lots of fun. I refuse to be down about a few stupid seizures and challenges.
Mr. Wheeler looks to be experiencing something very different indeed. He seems to fade in and out of reality. I have a hard time believing that an idiopathic sudden onset of a disease would look quite like this. I keep going back to a stroke or a concussion but he just doesn't look to be in great pain. He looks lost and confused and drugged to me.
I'm sorry if that's not very clear but it's almost as if humans have so many different senses that we don't have words to describe. I'm sure there are other posters who have seizure disorders who could expound on their experiences. There are so many different types but I just don't know of a variety that would suddenly strike an elder man and cause his behavior to look like this. My heart goes out to him, whatever happened. The confusion bothers me the most of all. Confusion is so frightening.
Wow! That's really horrible Missizzy. Your seizure disorder makes mine look like a day at Disneyland. Mine is controlled by Lamictal pretty well. God Bless you and I'll pray for some sort of miracle recovery for you.
Not only must that be frightening as hades but embarrassing as hades too. I'm glad you can communicate by keyboard because you're cool to have around. :blowkiss: