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Brain Zaps

  Today in my Dystonic journey has been a little rough I cannot seem to get across what I am trying to say to my wife or anyone else in the family. Sometimes with this disease I cannot elaborate on what I am feeling, or it may take me a second or two to answer a question. I am not Ignoring the person that I am talking to I am just trying to process what they said and then I can answer the question appropriately.
   When I first noticed this particular symptom my wife would ask me a question or be talking about a certain subject and I would start talking and it would have nothing to do with the conversation that we were having. This can come on suddenly or I wake up and know that it is going to be a long day. Today was one of those such days.
    I can seem to write, but I have to stop and think quite a bit about what I want to type or what I want to say. I feel what I call brain zaps where if feels like electricity is fire off in my brain and I cannot control it. It seems to last for a few seconds, sometimes longer than others and then goes away, but if I wake up with it it stays with me all day no matter what medicine that I take I still get them.
   There are times that my wife and I will be talking and I will go silent I can hear her I just can't answer her, my mind has forgotten how to express myself through words, but when this type of Brain Zap is over I go back to what I was saying even if it was in the middle of a sentence. So I have not forgotten what we were talking about it just takes a few minutes to recover from the brain zap. I am sure that is not the medical term for it, but that is what I call it.
   On many occasions I will be carrying on a conversation with someone and inevitably this will happen and on some occasions the person that I am talking to will just walk away thinking I am ignoring them, This has happened more than once. I am not ignoring I just have "NO Words" and until I have recovered I will have no words to say.
    I want people to understand that Dystonia takes over everything it is not just one symptom, sometimes I will say something and do not remember saying it. The only way that I know I said it is my wife will look at me with an interesting look and ask "Where did that come from." and to tell you the truth I do not know.
    Just please learn to be patient when talking to a person with Dystonia. We are not Ignoring you, Unless we are :-), thought I would throw that in there for the sake of humor. My wife says with this disease you can laugh or you can cry, well we have done both! We are not stupid either just at times a little slow to answer. because we have to collect our thoughts along with figuring out what the other person just said, and sometimes it can be a task.
   There are times my wife will have to ask a question twice, because in my head I have already answered the question, and thought that I said it out loud, but I did not. This can be very frustrating for my wife mostly because she is the one that tries to talk to me the most, but she is patient, and she will tell me that I might have thought I answered her I did not. So she will ask me again and hopefully I will answer out loud sometimes it takes 2 or 3 times for her to get an answer, but it cannot be helped.
   Just a little more insight to the everyday life of a Dystonia patient. Still be praying about the D.B.S. Surgery it is something we are going to consider if I am a candidate. My wife and I will make the decision, but, of course the final decision will be mine she has made that clear, and she will support whatever decision I make. She is an amazing woman we have been married now for 22 years and she has loved me through it all.

Comments

  1. Do you have the problem of following your own line of thought? One of my biggest problems is that I’m on my way to saying something...and then I can’t remember where I was going with it. I also frequently forget things I’m told. My family has adjusted...I woke up one morning thinking Abby would be back soon with her daddy. She was home, but I had forgot the day and the plans. Boy, did she scare me when she came in my room!! I’m also having to close my eyes a lot while talking...which seems incredibly rude to others. Will be praying as you go through your candidate journey...I firmly believe you will find God makes the decision...you simply follow. That was my experience. Love you...and the weird mental aspects do try the patience...of patient and caregiver. Especially when We can’t talk at all. I’ve got ear infection...so you know all too well what life is like here. Prayers always.

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    1. yes I do that as well ,I am always telling Rachel she didn't tell me something only to be proven wrong, and as far as losing my train of thought I can cover that up pretty well so far. We will see how long that lasts

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