Living With Dystonia

Dealing with Quite a bit at the moment still on Disability, which doesn't cover bills. I back date bills instead of ballots so we can kind of get groceries. my whole family has covid, and I am the only on that is Asymptomatic. My wife has been running a fever on and off for about 2 weeks, my Daughter who they think has Addison Disease has had it about the same length of time. Losing sense of taste and smell. Reminds me of the flu, but my wife has had the flue worse. Being Quarantined doesn't really change my life much because I do not go many places these days. My Dystonic has gotten better not as much Twisting on the outside, but still have the twisting and turning on the inside, and the mental side of it as I have expressed before is probably worse. So Much Stress at the moment doesn't help, but we will get through it, Talked to my therapist and psychiatrist and that helps along the way. any encouragement from people helps. I am thankful for my , brother Isaac and his wif

 Isn't interesting how the choices that we have made that we didn't know would effect our lives have, and decisions that others made for us effected them as well. We all look back, at least I do and wonder if a decision I made was the wrong one and f I had made another one would the outcome been different, but then I think this is the life I have been given it could have been taken from me at any time, there is not guarantee of a tomorrow. I may have a few mental and health problems, but who doesn't have a little crazy in them, and what is normal your normal is different from my normal so who can define what normal is?   I do believe normal to be the Garden of Eden, but now everyones normal is different. Dystonia and what ever other mental problems I have are not fun it is a struggle for me everyday to get out of bed knowing that I still cannot go to work like I used to, but I have to do it. no one knows except those who have it the mental toll it takes to go day after day

 It is turning into the Dog Days of Summer as they say here   105 I think yesterday, I can't stand the heat. I prefer temperatures in the teens and twenties and I know I am in the minority , but that is Ok because I am used to it. I think my whole life I have been in the Minority because my brain doesn't work like anyone else has seen     I had my first therapy session. It was interesting we will see in the long run if it helps or not. Some say it has helped some say it has not. The thing everyone finds most interesting about my symptoms is that when I wake up in the morning it takes me awhile to figure out where and what time period in which I exist. This can be from ten minutes one morning to an hour the next. I wake up wanting and thinking that I am going to visit my grandfather and we are going to watch baseball, That is why I Love baseball He knew it well!, there is a great amount of strategy that goes into it that if not for him I would have never learned,    but the on

 I am willing to admit that with this disease there comes some mental issues, and things that I cannot help. As much as I try to put on a face of everything is great in my life and I have no problems at all.   No one and I mean no one understands the mental issues that I have! I have been told I mope, and I use it as a cruch not to do anything, but what is missing and what they do not understand I exist in 2 different reality's. My mind exists in one and I in the other, and sometimes I do not know which is which.   Really all anyone ever does is get upset when I do something they do not like, or maybe wrong, but for me in the moment I cannot help myself. weather it is buying a hat, or Playing a video game for Long periods of time. This is not something I enjoy, but I do not know how to stop it, and neither does my therapist!     yelling at me or saying that I am doing this on  purpose is frustrating! for a moment put yourself in my shoes, just for a second believe with all your

I do not have much for updates, except summer is coming which means my health will take a downward turn. I cannot do much in the summer because the moment I step outside into the sun I feel like my skin is boiling, very unpleasant, as you can imagine, While others around me enjoy the summer, and the nice change of pace, I enjoy the Winter or fall, but here we have 2 seasons winter and summer no fall no spring.   It is quite interesting the take I have on the quarantine now that people have been that way for a few weeks, they are starting to get restless, and protests are breaking out all over the country, because people can't feel trapped, I might remind you that this is my everyday, there is no when it is over we will get back to normal and be able to go back out and do all of the things we love to do, because for me the truth is when this blows over nothing will change. I will still feel trapped, I still won't be able to go to most places because of the loud noises. I will b

    I know this may come as a shock to you, but all of the stay at home orders and the social distancing haven't changed my life my much. I Couldn't go much of anywhere or do anything before this started. So I have not really noticed a difference in my day to day non-activities, and many people are probably like me, and their Lives haven't changed much either.    To those of you you who are always on the go and suddenly had to stop you might just contemplate and remind yourself that there are people who must live like this all the time, and then you can appreciate what you can do once this has passed.     I did not write a single word in March, because I had something else on my mind. I was thinking about my beautiful granddaughter whose birthday was in March she was on my mind this March more than most, and I am not sure why, but it was so. I wonder what she would look like, what she would be doing, and I know she would be a papa's girl. I did not know that you coul

  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

I had my Doctors visit yesterday, and it was interesting as usual. My neurologist knows his stuff, but he is a little Qirky.   I got some news I did not expect though. He is going to send me to a DBS specialist because he thinks that it will help with my type of Dystonia, even though he will admit he is not sure what kind we have.   This movement disorder specialist is supposed to be one of the best in the country he can install the DBS Device and program it. They say it is a new DBS system, but the only thing new about it is the placement of the leads, and they are not Positive it would work. Another Downfall is I would be in a Coma for about three weeks, or however long the Device took to start working, because they do not want me to wake up and have a storm, Which for me brings up another question? If he can program it why can't he stop the storm relatively quickly with the device.   I do not have to have the device put in, but with the medications I am on he has to prove tha

Interesting Day so far in my world of Dystonia. I woke up and couldn't move at all. I was trapped, which happens from time to time, but a little scary none the less. I was aware of what was going on around me. but no one else could tell. a full body charlie horse is what I would refer the pain as. My body slowly came around to where I could move except my legs. They had decided they were not going anywhere for awhile. and that pain in a twisting pain. If feels like every muscle in your legs are twisting and turning.   As you can tell I was finally able to get up and around, but very slowly. usually I am not in this much pain on a Daily basis the pain seems to come and go, but it has not subsided today, and there is no reason for it.   I guess a good day as any for a Dr. Appt. I imagine he won't have any answers either.    My mind had become so erratic! I never used to get angry or frustrated at things, but that part of my personality had changed. I read my post from yesterda

I am not going to lie. I have had 2 months that have not been good on the physical or mental side. I do not want to be on disability, I do not want to depend on the government to try to take care of me, and I cannot seem to wrap my mind around the disease that I have.   No one even wants to give a chance to someone with my condition, why? am I that worthless? It is beginning to look that way to me. There is no one other than those that have this disease that can relate. they say they "understand. but they don't how can they. Family doesn't understand if the symptoms are not the same.    I am struggling to put into words what I feel, but it can be very difficult at times, because I am not sure what is going on. There are some days I do not believe I have Dystonia and should be able to stop all of the pain, storms, and everything that comes along with it. Is this Disease even real or is it something I have created in my mind?    I cannot convey to you in this article how

The start of 2020 is not how I expected that it would be, I had been feeling better and my mind seemed to be getting clearer, but just as Dystonia does it hit like a slider thrown from a fastball closer! We had gone to the ER because my daughter could not swallow, and we wanted to know why she had seen the E.N.T. and he said from what he could see everything was fine. So he sent the three of us, my wife, daughter, and me to the E.R. We had been there for about thirty minutes or so and I felt a twinge in my back, which for me is not good. I have felt this twinge before and each time I had ended up with a hospital stay. I was hoping this would not be the case, but I was wrong.     I begin to have a Storm in the E.R. and they were not sure what to do with me as is with most hospitals, so they called my neurologist and he told them what to do under the circumstances. There is a cocktail of medicines the they give me through an I.V. and that is what they tried, and that has always worked t

I’m not very good at sharing all the health challenges that I face...and that as a result are faced by my family. Joshua does a much better job at putting into words what that is like. I wanted to make a post about the relationship Joshua and I have together...and how it has changed over the years.  Joshua and I have been close for as long as I can remember. We are only 19 months apart so I don’t remember life without him. Each of my siblings played a special role in my life. I loved being outdoors, but if I wanted to go get muddy...well, Joshua wasn’t the one I asked.  However, Joshua was a good listener, and we could have some great conversations about so many subjects. He also loves Southern Gospel music so we would listen and sing together. He has musical talent. I don’t. He still put up with me though. Since we went to Christian schools or homeschool, we frequently had classes together. Sometimes three years were put in the same classroom. Once in the seventh grade, 7-12th