Living With Dystonia

       It still amazes me that even the family that are closest to me still do not seem to  understand the mental part of Dystonia. Sometimes the mental toll that this disease takes is far worse than the pain that is causes trying to deal with depression is hard enough. I can be in a room full of people and still feel alone. My mind can't keep up with certain things to which I never gave a thought. keeping track of a certain train of thought, or just trying to remember what you were going to order at a restaurant can be difficult.     The pain with this disease often cannot be seen so you look just fine, but your muscles are twisting like crazy and it is very painful just to stand, yet they will continue to ask to to do things thinking you are lazy, or just do not want to help, which is certainly not the case. I want to help, I want to work, but so far the Lord has not seen fit to let me go back. it is what I want, but as the saying goes we don't always get what we want.    S

 Sitting on the third step looking Down into what used to be my bedroom. I am thinking to myself what just Happened! there is three inches of water in the Basement and it is still rising. The Rain is still coming. I find myself frustrated, my wife and my son are getting all of the belongings that matter out of the basement, Which had not Flooded in more than 20 Years at least Probably more, I cannot help because of the Dystonia. This Disease Leaves me feeling Worthless. I should be the one that is down there getting everything out not my wife, but she does it without a complaint at all. She just wants to get the job done, but for me what am I to do?   It is hard to put into words when you see all those around you doing so many things that you used to be able to do, but no longer can. The Lord has a plan, but what is it what could ever come from this that is good why does my wife have to do so much with all the emphasis on me not on her? I guess that is where faith comes in. The

Springtime in "Tornado Alley"   Spring time in, "Tornado Alley as it is called, is not a particularly great time for those who suffer from my type of dystonia. The Electricity in the atmosphere can drive the electrical signals in your brain crazy. This will be a short post. Well, because of storms and electricity in the air. It is very hard to concentrate during these times.   My wife and I used to sit out on the porch and enjoy these "Lightning Shows" together, While we where rearing our six children, and it was a getaway for us after the children had gone to bed. That time is long past even lightening 10-20 miles away can cause a Dystonic Storms.., Like today. We have since moved into a house with a basement which helps,                                                                                                                 and I can wear Puma hats because of some material in them that helps a little as well, But after awhile you get it feels

My Life With Dystonia These First few writings, or musings, I guess some would call them are going to be about My Daily life Some of the Struggles that People around do not Even realize we have. Close Friends do not Understand the Daily Struggle.        I was Working at Pioneer telephone and was a Network Technician. The Job was not always fun, But it was better than not having one at all. I was close to getting My CCENT for the techies out there they know what that it but just to say it would have meant very Much to me to get it. I was much like everyone else, but after work I noticed I was exhausted. It was normal at first, I thought, everyone was tired after work Right? Then I began to notice what my fellow employees could do after work. It was amazing to me and I began to wonder. at sixteen years old my sister Got the Disease, but she could handle it better, she was more equipped. I was a man who had to support my family. So I continued. Ignoring the signs of the Disease. Th

My Life With Dystonia It was about Ten years ago, My sister was going through a Hard time with this disease. I did not understand it. For some reason we don't take up a cause until we are affected by it. She had undergone DBS surgery you can read more about that from the Link.    She began to have Dystonic Storms, Link to what one Looks like to come later, I would take care of her it was a tough Job, but even tougher for her. I never dreamed I would later have the same disease. There will be more to come financial struggles, and yes there will be some triumph. I Just want to take you on this journey with me. this is a Terrible Disease it affects the whole family. Please this may be boring at first, but will you follow the Journey