Skip to main content

The Start of 2020

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 this time though was different it didn't work. so my wife was running back and forth between 2 rooms, I really felt bad for her, so they called the neurologist again because the Dystonic storm still had not let up, and we are going on about an hour I think, and they do not like these things to go on that long, so they called my neurologist again and he said that this was the worst case scenario, but propofol  was the only thing that would stop it. I had never had to use it. I have heard of Dystonic patients having to have it but not me, but with Dystonia my body is getting used to all the drugs they use to treat the disease, and by the time they brought the machine in I was in excruciating pain. It only took about three or four seconds, at least that is what I am told, because I would not remember and I was out and the seizure had stopped.
    When I woke up I was still shaking and in pain, but for the most pat the storm was over, and now came the recovery. Typically for me I spend 3 days in the hospital before I go home, and my wife will not leave my side. I thank God for her everyday because she does so much for our family, and undoubtedly one of the most selfless people that I have ever known.
     So it took the normal three days to recover, and be able to go home, but this time things have been different I am very weak, and cannot move very far without feeling like I have Just run a marathon!, and on top of everything I now have a sinus infection for which I will be going to the Doctor.
    That is how my 2020 Dystonic Journey has started. I hope we can go up from here, but I never know. anyone who has this disease knows that each day brings new challenges, actually sometimes each moment brings new challenges. I have met some through Social media that have this Disease and I write because it helps me and I am trying to bring awareness and a little bit of insight into the everyday life of those with this disease. I hope these writings help you understand a little of what the disease is like, and what challenges that Dystonia Patience may have on a daily basis that are very routine for the average person, but are challenges for Dystonic patience.

Comments

  1. So sorry this happened...especially as you tried to get help for your daughter. I had three violent seizures in the last 24 hours...I feel like I got hit by a Mac truck. You are right...this disease fights everything we throw at it. Thankful for Gods strength...knowing he will never leave me. Thankful for my hubby and daughter as caretakers. Love you...and you have constantly been in my prayers! 💙

    ReplyDelete
  2. Hi, I stumbled upon your page, and it looked and sounded interesting. When I saw the word "Dystonia" I thought to myself this may be a place where people may have similar or the same difficulties and struggles.

    When the Dystonia started, it was benign. I had a mild "twitch" or "tic" in my neck, where it would wondered why my neck felt so much better if my neck was turned to the right. Also at work, I kept turning my head to the right. I worked at a grocery store as a cashier, so looking both ways was part of the job, as I was scanning from right to left lol.

    As slight as my tic was I noticed it, but thank God nobody else did. That changed on December 20, 2004. I was driving a Corolla, and it was dark, icy, and lightly snowing when I pulled into a grocery store. There is usually a small exterior road that encompasses the entire parking lot (in a strip mall).

    There are real, official stop signs on several of those roads, that lead to the 'exterior road,' and then exit the strip mall. That's exactly what I was doing, except I was headed in on exterior road. Out of nowhere, as it's snowing, a white car glided past the stop sign, just as I was entering scene. When I was almost done with

    After a quick and stupid neurological exam, the other insurance company paid a random neurologist (to inspect me) $40,000, for an untruthful, and it really sounded like he wasn't a doctor. After all that, I couldn't prove it was the car accident, that made my Dystonia worse.

    That was 15 years ago. I have been living with Dystonia for a long time. However there are two different advantages in my daily life. Well, it helps my daily life. 1. I've been getting Botox injections for 14 years (I'm thanking the good Lord that I haven't become immune to the Botox, like any other medication.

    The second thing I use is Cannabis. I never thought I'd ever be a pot smoker, and the truth is, I'm not! Probably really confused right now? lol. I choose to eat a gummy bear each day. I buy them in bulk, at a reliable and supportive dispensary. The two combined really help my CD symptoms.

    Thank you for having this page for yourself and for others. Also, thank you for allowing me to write on your site. I appreciate it b/c I was able to release setbacks and face most everything head on (no pun intended).



    (Suzy1963@yahoo.com. An email that is used a lot more than the first email addy I added

    ReplyDelete

Post a Comment

Popular posts from this blog

Living with Dystonia My Story. Follow me on my Journey for a cure

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  

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. Thinking i…

Springtime in "Tornado Alley"

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 like kind of a prison when you have on day to a week like these. It is hard on my wife as well because she is constantly ru…