Living With Dystonia

     There is so much in life we take for granted. We go about our days and never really think about the small things . One of those is just our day to day talking. I know not everyone with dystonia deals with the speech issue but if you do it is definitely interesting.      After Josh and I were married we had moved into a new house and his sister had come to help us unpack. I remember I had made him something to eat and asked him if he wanted something to drink. He said he wanted some klim. That was the first sign of dystonia but we didn't know it at the time. If you read klim backwards its milk. We laughed about it and didn't think much of it. Then one day he said we needed eeffoc snaeb, that's coffee beans. So it began!     We now have our own language and communications. Sometimes his text will be backwards. I'm not talking just the words but the whole text. The last word will be first with the rest of the text following in the wrong order and spelled backwards

 One of the things I do not like talking about, but is real to Patients with Dystonia is the Financial problems that come along with the disease. This problem brought about my depression, anxiety, and feeling of worthlessness because I could no longer provide for my family. It is not a permanent vacation. I want to make that clear!   Believe me, the last thing that I wanted to do was rely on the government to provide for me and my family, and I never would have guessed at 42 I would be disabled and not able to work. I have been asked why I cannot work from home, and the answer is an easy one, because I do not know what days I could work and what days I could not work. I can have a decent day one day and a bad day the next, or I can go from having a good hour to my brain starting to misfire and the rest of the day I cannot do much of anything, and sometimes one moment I am normal and the next I am having a Dystonic storm it cannot be predicted, and getting people to understand this

 To some closing ones eyes while someone is talking is considered rude, but you will find that if you visit a Dystonia patient they may indeed close there eyes. The first thing that comes to your mind is that they are not listening, not interested in what you have to say, or have become bored with the conversation, while this may be true when talking to a non dystonia patient it is not however the case. There have been many times I have closed my eyes when talking to someone, and they will get offended because I did so. There is a lack of understanding the dystonic mind.     The Dystonic mind gets overwhelmed quickly, and if distractions are not shut out the brain will go into what I call a frenzy, and thus cause a Dystonic storm or I will forget whatever you where talking about anyway so I will have offended you anyway either because I closed my eyes, or that I was not paying close enough attention to the very important, worth getting offended subject about which you were talking.  

One of the hardest things with Dystonia is trying to know when you can go out with the family and do something, go somewhere or for how long. I know for most people if they want to go to get something or go somewhere they can hop in the car and go without a second thought, but for me that is not the case. We have to look at the weather forecast to see if there are going to be any storms we have to know how much noise will be there what kind of acoustics will the room be in, and for some reason when we ask these questions some get offended and tell us that if we do not want to come then don't, but we are not trying to find an excuse not to come we are trying to find out if it is a possibility. Sometimes it is and sometimes it is not, and sometimes we do not know so we give it a try.    for example I had a good week a couple weeks back and my wife had some things to do so we decided that I would go, and we always know the risk of my having a storm in the car, or not being able to

The Mind of a Dystonic patient is very different from a normal one things that normally would not bother other people, they do bother me.    I had another emergency visit to my ear doctor, I had seen him only three weeks ago, I had another ear infection it is the 6th one this year and the year is not done. He said, like so many other doctors before, that there is nothing he can do to prevent the infections i just have to get to him as soon as I feel one coming on. I get fungal infections in my ear because of the neuropothy. It does not matter how hot or cold it is outside I sweat, and my ear canals sweat and cause the skin to get infected, and then I get shooting pains up the side of my face. This is all to familiar the reason I am on Disability is because I had a staph infection in my left ear from which I have never recovered. He put a wick in my ear with a steroid and anti-fungal cream to kill the fungus in my ear, that is very painful I might add.    When this happens my brain

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