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Dystonia Awareness month Who knew?

Realistically How many of you knew that this was Dystonia Awareness month? I didn't see many banners, or many people running for a cure or anything much at all about the disease. Sometimes I think the only ones that are aware the disease exists are the ones that have it, and there immediate family. Even friends as they go through there day were no more aware of Dystonia than any other month. They go on about there business as usual, but if it were someone with a perceived more serious disease than we would talk about it we would encourage the one who has the disease.
    All I am saying is that Dystonia gets put on the back burner not many people think of it even if they know someone who has it. We just get told that we are crazy, and it is all in our head, we are making it up to get attention, I can think of alot of ways to get attention this is not one of them.
    I had a symptom for the first time yesterday. I fell 4 times because of it. My legs and feet would all of the sudden twist outward and I would have to bend my knees to get my legs to move forward, very painful, but it was the only way I could move. It can get very frustrating at times when people do not want to believe that what you have is real. As I have said in the past there are sometimes I question weather or not what I have is real or a disease that my mind has made up, but there are too many stories like mine for that to be true. I have read a few stories of people with dystonia and their symptoms are just like mine, which is encouraging to know that their are people that feel the same way you do, not that you wish it upon them, but to know that you are not alone.
     I Spent most of dystonia awareness month inside because of the heat. Direct sunlight and even heat causes a sensation that my skin is on fire, and that is not made up I can promise you. For those of you who know someone who suffers from any kind of Chronic illness or chronic pain have you thought about them this week or this month? Maybe someone you call a friend send a text to see how they are doing?
      What about the caretaker? they get left out alot why? I do not know. What I do know is that my wife my caretaker loves me and takes care of me through all of the OCD and all of the storms all od the little quirks that come along with dystonia which is alot of things, and she herself is suffering from spondylitis, which causes extreme back and joint pain. It is almost like R.A. but is hereditary and can be more painful.
       I think about her often all the things that she could be doing yet she chooses to take care of me. She should get some encouragement from somewhere, but she is often forgotten as well, and if it were not for her I would be in a psych ward somewhere cause not sure anyone would want to take me with all my issues.
      I want to address another issue. It is a question I have been asked on multiple occasions. "Is disability like a permanent vacation, and isn't it fun not to have to work?" The answer is a resounding no. I would much rather work than be on disability. regardless of what some might think disability does not pay well! financial struggles are the norm around here. If we have enough money to pay all of the bills we do, but sometimes we do not so they have to wait. Most of the companies are not happy, but if I have nothing you cannot take it.
     I want people to be aware of this disease, the mental, physical, and emotional toll that it takes on all involved. So if you know someone be an encouragement to them remember them, and not just when you see them. Pray for them. There are a lack of encouraging people today we would rather tear down than build up. be someone who encourages. Tell someone about this disease! raise awareness for it so someday there may be a cure!
    The Journey is hard, but with the Lords Strength I will run my race, and finish my course well. May we all run well and finish well. God Bless


  1. Unfortunately, as I read in a magazine, people who really suffer from dystonia are generally not out in public much. That is the reason few know anything about dystonia. Yet, there are people who know people with it, and it would be nice if some advocates would bring dystonia more to the forefront. I know plenty of people, some who have known me a long time,that believe I did things for attention. My comment?? Where is the attention? My hubby could bury me today, and I could be dead for months before anyone knew. I’m not saying this for pity because I don’t want it. Once again, “ Where is the attention??” The truth is it is not there so why people who know me think it isn’t real is something I’ll never understand. Maybe somehow it makes them feel better. Either way, I know far too many people with dystonia to totally give up on educating people when they have no clue what dystonia is. Love you and your wife...and I’m glad we have each other. You are a wonderful blessing to me, and I love you. Oh, and in case anyone is wondering dystonia is no vacation.....

  2. Mother Goose has seen firsthand the suffering of her goslings who have Dystonia. I have always known that it was real. When the doctors said that it was psychological, I knew that they needed their heads examined. My daughter would rather be outside playing basketball 🏀, football 🏈, or stomping through the creek - she doesn’t want anyone’s attention. My younger daughter would rather be sitting on the church steps outside talking with the other young people than lying on the sofa 🛋 in the ladies room stiffer than a log. My sweet son would rather be tinkering with a computer 🖥, taking his lovely wife out for dinner 🍽, or playing his guitar 🎸 and singing 🎤 than having his body contorted in some strange shape, falling as he just tried to describe and suffering with pain and heat so that he can’t go out of the house 🏡. I have known my children since before they were born. I know their personalities better than I know my own. I knew for years that people even in our church ⛪️ thought that they were just making up their symptoms. Some of the things that I have had to watch my children do, are not physically possible. Try turning your foot so that the sole is on the top. I will wager (if I were the wagering sort) that you cannot do that. Try twisting your leg so that the foot is backwards - you can’t do that either. I have watched my children do a lot of things that you can’t do. Trust me, it would be so painful that you wouldn’t want to do it - especially not for attention. I have seen my children suffer things that I hope you don’t ever see your children suffer. If you do it will break your heart. What will make your heart break almost as much is knowing that people who are supposed to love you think that they are just making it up for attention instead of suffering like I hope that you will never understand.


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