Aspiring Poet, heartfelt thoughts.I Have Dystonia, bipolar, and an Avid Southern Gospel Music fan

Dystonia is a neurological movement disorder that causes involuntary muscle contractions, leading to abnormal postures and movements. Dystonic storms, also known as dystonic crises, are a rare, except in my family it is quite common, but severe form of dystonia that involve prolonged and intense muscle spasms throughout the body. These spasms can be extremely painful and cause significant physical and emotional distress.  Waking up in the middle of the night to a dystonic storm can be an incredibly traumatizing experience. Believe me!! I will never forget the first one for me. One moment I was lying on the bed just fine, and the next I was twisting and contorting in ways I cannot explain.  The sudden onset of intense muscle contractions can be extremely frightening, leaving individuals feeling helpless and out of control. The pain associated with the spasms can be excruciating, and there is no way to  find relief or comfort.  In addition to the physical symptoms, dystonic storms can al

    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

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

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 have not written about much in awhile, probably because I do not have much to say, but I can put into words what I am feeling much more than I can explain them to someone. This time of year "The Holidays", for me is a tough time.   At one Time I had a Job so I could afford to give my grandchildren gifts, and see their faces when they opened them, and now it is difficult if not almost impossible to do so because everything goes up except my income.   This year has been Particularly hard because I have had new symptoms arise and they can prevent me from attending family functions. One such symptom is lately I have been waking up, and I do not recognize my surroundings, and nothing that I see looks familiar, and it is a very frightening experience. I do not recognize my wife or anyone in my recent past for some reason my mind seems to be stuck on an age when I was around 4 to five. I can remember vividly seeing my grandpa, but he passed away about 37 years ago, but in my min

     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

 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.  

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

     I do not get offended very easily anyone who knows me knows that. I Just let it slide and figure someone was having a bad day and move on to the next thing whatever it may be, but I do get frustrated when people refuse to acknowledge that Dystonia is a real disease, or they think that The Patient has made up the whole thing in there head. believe me if I were going to make up a disease it would not be this one! I know some people think that everything I do is fake, and just to get attention because they have told me so, but I could get attention other ways than this, and my wife would tell you that some of the things that this disease causes would be hard to fake. As you read this you may think the whole thing is a farce and I could quit whenever I wanted to, and you can keep that opinion that does not bother me, because I know the truth, and those who have never experienced the disease for themselves I get it.     There are however 2 words that I know get under the skin of most

One thing I have not really addressed here is the constant pain that Dystonia causes. There is never a moment when Pain is not a reality, because with this disease pain is your reality. There are definitely Times that I feel better than other, but my muscles never stop.    During a recent Dystonic storm I was so exhausted, but my muscles kept twisting and turning I looked like an owl because my neck was turned almost completely around, and my legs would not stop running, and there is nothing that can be done. I have to wait it out, and wait for it to finish. It is like you have run a marathon and you cannot go any farther, but you keep going only because it will not stop. I have gone to the hospital several times with these episodes that do not stop, and they try to give me an I.V. and it does not work because my arms and hands are twisting and thrashing, and I get told to stop it, does not make much sense because if I could have stopped it I would not be in the hospital in the first

   Today. I woke up about 3 times during the night it felt like every muscle in my body was twisting and turning for the fun of it, and it felt kind of like the burn after a long run only this burning doesn't go away. Usually if you wake up twisting it is going to be an all day twisting and I have to learn to deal with the pain that it brings. Even my chest and rib cage feel like they are twisting. My hands are so shaky I dare not do the dishes because there probably wouldn't be one that is not broken after I have finished, but I try to do what I can.    I will not lie there are sometimes I feel ashamed at how little I do around the house to help my wife. Today she willingly got up and is going to finish cleaning my parents house, by the way It is something she enjoys it get her out of the house and she gets to spend time talking to our Daughter. She mowed yesterday, which incidentally is one of her favorite things to do. I am sorry if this may be mistake filled, but like I sa

    I haven't posted in awhile because I have been on a roller coaster of emotional, financial, physical, and mental issues that all play a part in how a person feels Physically, and that is weather or not they have Dystonia.      There is always the question am I going to be able to get out of be tomorrow, and if I do what am I going to be able to do. Some days I can do more than others I just never know. I can feel perfectly fine one moment and the next feel terrible, and that my friend is how the disease works, and when the bad days come all you can do is lay in bed while everyone around you works. Just this week my wife had to feed me because my arms were to week to lift the fajita. sounds weird huh? Yeah, when your wife has to feed you because you cannot feed yourself it is a weird situation, at least for me because I like to be able to feed myself, but when your arms are twisting around your back it gets a little difficult, and believe me it took awhile for me ever to all

Imagine if you will that in the blink of an eye everything you knew changed. Everything you could do every exercise you enjoyed, every sport you Loved to play, and your job, that you say you hate, but really you don't want SSDI, was taken away. Put yourself there for a minute or even a second. Picture what your life would be like, the drastic changes that would have to be made the financial cuts of things you enjoyed were no longer affordable. If you played an instrument you may not be able to play it with this disease there is no end to what it can effect, or a sport you loved to play, no longer even an option, and all in a span of about 12 hours. This is my life.   This is the reality for every Dystonia patient and if they are old enough to remember they remember when everything changed. for me it was October 16, 2016. I started like a normal day except I had ear pain. I went to work thinking nothing of it assuming that it was one of my ear infections that I usually once or

We are now finally in the process of trying to get everything cleaned up after the recent flooding removed us from our room in the basement. It is now dry enough to start trying to seal the concrete again and get it ready to move back into. My wife cannot wait, she does not like clutter, but we have a basement full of clutter upstairs. A friend from our church has been kind enough to help us out, and through various donations we have enough to begin    We began the process this weekend. I should not say we because it has been so hot I haven't been able to do much. I am still having the problem with my skin feeling on fire, but that will get better, but probably never go away. because of this we have been going to bed earlier and the new medicine allows me to wake up earlier so I can enjoy a little bit of the day before the heat sets in.     We got the brick and mortar picked up so we can brick the outside of the finished part of the basement and seal it, that is where most of t

I woke up this morning in an extraordinary amount of pain. The Neuropothy is still bothering me so it felt like mt skin was on fire, However the Dr. changed my medicine I am doing somewhat better in that regard.   I couldn't feel my left leg or my right had so I positioned myself in a way that I could see why. as it turns out my arm had turn itself all the way around at some point in the night and my leg had done the same thing so I little to no circulation in either. I used my left arm to turn my hand back around so it was normal again, talk about painful, I could feel my arm when I turned it around into the correct position. Turning my leg was a little but harder because I could feel my hip twisting which in turn probably caused the rest of my leg to twist. After awhile I managed to get myself untwisted, but I am still sore from that ordeal.This is not unusual for a Dystonia patient may times I find myself dreaming about having a Dystonic storm and sure enough when the pain wake