Living With Dystonia

  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