Living With Dystonia

We have had our Grandson all week which is fun, but since my wife has to take care of him most of the time she gets worn out on the weeks that we have him. He will start school soon so we will not see him much. She plays with him as much as she can even with her Spondylitis she keeps going.     I have noticed the past few times we have had him after he is gone,and she gets a chance to relax she ends up with a migraine headache, and for those of you who have had them nothing can be done, and you can do nothing until it is gone.     I was not able to get out of bed, or move for that matter until almost noon today so that is half the day! These are some of the days in which a Dystonia patient feels worthless, because there is not much I can do to help her. I over heat very quickly. So I try to do what i can, but it is not much.    She carries most of the load on her shoulders. This is where the caretaker does get enough credit., because when the headache goes away she has everything st

  It is becoming more and more difficult to maintain a positive outlook the longer the disease goes on. When I first learned that I would not be able to go back to work, it was only for a week. I thought after that week I would be back at work and everything would return to normal, but at my second doctors appointment the doctor told me I was not strong enough to go back to work, and I needed to consider short term disability. I did not even want to consider it, but he would not give me clearance to go back to work. I did what he told me to do and filed with my employer for short term disability, and again I thought after the short term disability length was over I would go back to work, and my job would be safe because they have to hold it for you when an employee is on short term disability.    I went back to the doctor and he sent me to a neurologist, and then I got a second opinion from another neurologist. so at this point I have 3 doctors telling me I can't work and will pro

    This topic is a little different for me than most people in my family. The Topic of Noise that causes Dystonic storms. Yes any sudden unexpected or expected noise can cause these storms, for instance if someone is in the Kitchen cooking and a pan hits another one and makes a sudden noise this can trigger a Dystonic storm because the sound just keeps resonating in your head! It is not in your ears as one might think, but it is all about the brain. the noise can cause many types of reactions in a Dystonic patient. It may cause them to become stiff and not be able to move, or on the other hand it may cause them to have tremors and they shake uncontrollably. We never know what will happen as a result. My family has been very conscientious of the fact that sudden noises can cause these storms, and have tried the best they can to avoid them, but none the less they happen. One thing you must remember is do not be afraid to invite someone over to visit or go visit them because you might

for some reason this year the heat has bothered me more than normal. I cannot get cooled off. I am sitting in front of an air conditioner and fan and am still sweating like crazy. I would say like a pig, but they do not sweat that is why they roll in the Mud to stay cool, Just a rambling thought.   The interesting thing is I am backwards from everyone else in this regard most in my family feel better when it is hot, they feel better in the summer, but , of course , not me I love the winter time. This is Just one example of how the disease can be totally different, and yet the same.    I am reminded of when I had the EEG done at home they hook leads to your head hoping to find something in there, not sure they did with me, anyway they did a two day test. I could not do the full three days because I would pull on the leads during the storms I was having. I was told I would have a full report of the findings, but it has been about 4 years and no report yet. My guess is they could not re

This is my Life. Today I woke up and stumbled around because I had no balance, no one could understand me because I spoke in cursive, that is the joke around our house. I couldn’t get my medicine so my wife had to do it all the while trying to clean up the house. Usually I have to have one cup of coffee in the morning to get the wheels somewhat turning, if I have any left.    Roger Hall made me a cane that has been very helpful, and I thank him for that because without that I would be on the floor most of the day with my wife having to pick me up. My thoughts may be somewhat scattered today because that is the state I am in.      With Dystonia the electrical impulses do not always go to the correct place, that is why sometimes I cannot speak, but I can still sing, sometimes I stutter but when I sing I do not. It is all a mystery to me and to all my Doctors. My sister has been going through this for well over twenty years. Today as well my legs feel like one giant Charlie horse, v

  One of the more frustrating  things, I find, is people really do not understand that when I say, "I cant" that does not mean I do not want to.   I have been told to "push through the pain", "suck it up. You can do it". With this disease that is not the case. If I find myself overdoing it then my wife and I will reap the rewards of my overdoing it.    I can give you can example, but this one was my fault. I wanted to play basketball a few years back, I had not had the disease very long, nor did I understand the consequences of what would happen if I participated in said basketball game. The game lasted about 20 minutes and it was probably 80 degrees outside, and about five minutes after I finished I knew I was in trouble. I could feel the twisting starting in my legs and by the time we got home my head was twisted around so I looked like an Owl. This went on for 3 hours, and it was a painful three hours, I decided that for 20 minutes of basketball this

Dystonic storms, from what I have seen, can been seen or just noticed, My wife notices when I have a bad day, but I do not have a manifestation of the Dystonic storm. Other times it can look like I have Parkinson's disease because I have the constant shaking with no twisting, and I also have the kind where I am not sure if I have legs, arms hands, or fingers because I cannot see, and I there is no feeling in them.    The type I am going to talk about today, I do not know if anyone that has this disease has had experience with, is Sometimes during a Dystonic storm I will forget where I am, or how old i am I will go back to thinking I am a child. These are the ones that are most frustrating, not most painful, usually but frustrating. It seems like I suddenly wake up and I am somewhere I am not familiar with. I am afraid my parents will be upset because usually these are late at night. I do not remember that I am marries or have children or even have grandchildren. These are also

One of the hardest things I find in my day to day life with this movement disorder is exactly that. There is never a time when I am not in pain, and it is hard to describe. My ribs always feel like they are twisting my arm and leg muscles are either twisting or just jerking, sometimes this can be seen sometimes it cannot. As a patient I try to hide the pain that I am in because no one wants to really know the pain this movement disorder constantly gives.   For example, I play the bass guitar for my church it is something I love to do I also play, or attempt to play the acoustic guitar as well. When I am playing the bass guitar I cannot control the leg movement so it may appear to some that i am having to much fun in church, it is a baptist church after all, but the truth is i can't control it. Sometimes my neck will twitch and get stuck in a certain position and it takes a little while to loosen, and afterwords it is very sore. I have had people ask me why I have to dance when I p

Anyone had day where they cannot concentrate on any one thing, but everything is moving so fast even  your words are slurred Such is the case I find myself in today, and many Dystonia patients are the same way. These days are very difficult because no one can understand what you are trying to communicate, and as you can imagine this is frustrating for both parties involved especially when all day I here huh,? What was that? Ok say that again. I just usually give up. The feeling of you having no control over your mind is very difficult. You can’t control what you are thinking about or when that thought will disappear, and you’re mind moves on to another topic. This can be very difficult when talking to someone you just jump from one subject to another, and they can’t keep up and neither can you because you don’t remember what you have or have not said, or if you said anything at all. Sometimes you think you are saying something, but it stays in your head, and other times things you

Today we had some warm weather so I was able to watch some of the things going on outside to get all of the things out of the basement. We now have mold growing in the basement so we, my wife, is taking bleach water and cleaning it out with the help of my son. this is Just some of the mess that the  they Have had to deal with. The frustrating part is as a dystonia patient you watch from a distance. you feel like you are leaving your family to do everything while you sit and do nothing. I begin to feel that way as well, and I begin to believe that they are upset because I am not helping in anyway.   My wife has done the most clean up, and sometimes I wonder why she does it. Her life is hard she cleans the house, makes supper, cleans the car, drives all of the children to there doctors appointments all because I can't, and my daughter stays home and takes care of me all the while my wife is worrying that something is going to happen and she will not be with me. this is her life a

There area actually many types of Dystonia on which the medical field in doing studies.  E arly onset dystonias , Isolated (Primary)  cervical dystonia ,  dopa-responsive dystonias ,  myoclonus-dystonia ,  paroxysmal dystonia's/dyskinesias ,  rapid-onset dystonia-parkinsonism ,  X-linked dystonia-parkinsonism , and others.  Some of which they have medical diagnosis treatment plans that can help.    Our family doesn't seem to fit in any of the categories we have components of both, but the dystonias with parkinsonism would be to seem to me to be the best fit. My sister Rachel has done much research on the disease and is very knowledgeable about the treatment options, but the options that work for her do not work for me. The drugs they use have many different side effects and with some of them, even my wife will tell you, that they cause more harm than good! All of my siblings have this dystonia, but it is worse in some than in others, and all of us take different medicines, alt

As I have spoken in the past the mental affects of this Disease are sometimes are beyond description. When my sister was first having the symptoms they said it was all psychological, and she could stop anytime she wanted to. There is a psychological component to the disease, we know that because of what is going on during the dystonic storms, but it is more than that. After the storm has past and I have regained somewhat of a solid mental state that is when the mental part of this disease can really affect you. The feeling of worthlessness, and being a burden to those around you. I speak for myself here, I wonder why I am still here. It seems all I can do is cause frustration, worry, and sometimes I think to myself they are angry, better off without me. Depression is real,  a real mental problem.  It is not the pity party kind of depression, and I have had people tell me I should just get over it, but sometimes I feel like my life is just spinning out of control.      Mental illness,

       Having Dystonia means many things will change in your life. One of the many that I find most challenging is my ability to stay upright, or walk in a straight line. My  Mother could also attest to this as well. If I ever get pulled over by a Police officer I would never be able to walk the straight line! Ha, they would have to try another test, and I know my sister is the same.       When I worked at a company called Temtrol I used to be able to walk on a 1x2 inch metal beam and we were up about ten to twelve feet off of the ground, and now it is frustrating that I have no balance at all. If I turn around to fast I can fall, or if I stand up to fast I fall, or if I do not know that my legs have no strength I can get out of bed and I fall, and guess who has to try to pick me up when I fall? Yep you guessed it either my daughter, wife, or son, and I am not a light person I am about 6 feet 1 inches tall and weigh about 217 pounds so for someone as small as my wife it is very diffic

    We Lived in town for about 12 years before we moved to the farm. With a Dysonia patient, or my kind of Dystonia I live in a constant state of confusion, constantly having to ask what day it is, or where is the silverware, towels, plates, for me one of the toughest parts of the disease is that if something has been placed somewhere the first time, that is where you always go to find it.     When we moved to the farm I was still working so my wife had to so show me where she put everything in the cabinets in the Kitchen and bathroom which dresser was mine, because you have to change everything when you move right?..     We have lived at this farm for almost 10 years and she has moved things around 3 or 4 times since we have been here, but when I want a knife I go to the same place that she put it when we moved in and wonder why it is not there. I do not remember her moving it even though she has told me hundreds of times. I have to sit and think, ok where did she move it?  I think

    When I was Diagnosed with Dystonia it took a toll on the whole family having to try to take care of me, and plan things around my storms, but it was really hard on my my baby girl. She was about 10 years old and she did not like to see her Daddy, as she used to call me sometimes still does, go through the pain of the dystonic storms.      We had just had our son  just a few months previous, and we did not expect to have another so soon, but as I have learned what I have planned is not what God has planned! I can remember when we announced we were expecting another baby at our church and we needed prayer for a healthy baby and healthy mom, there was a collective gasp that we would have a child so soon! What they did not understand is that God knew we would need this child in the future. I was also told it was not my job personally to repopulate the earth, that I could leave that to other people as well, because at the time we were rearing my nephews as well. that would make a tota

     Ever had a charlie horse and not known what to do? Ever had a full body charlie horse? ever had a moment that you could not speak, When just a second ago you could? Ever had full body paralysis. You could hear everyone talking you every little noise, and it caused more pain than you could ever imagine?     There I was, on my bed fully awake, and my wife was tapping me on the shoulder, I thought I was turning and speaking to her because that is what my brain told me I was doing. It became obvious to me within seconds that I could not speak, move my arms, legs, or any other part of my body. I was trapped inside my mortal flesh and no one knew it but me! there was no way for me to communicate that to my wife, who by this time was tapping quite hard, because she thought I was asleep. I was scared this had never happened what was I supposed to do? My eyes wouldn't even shut! Trapped! How do I get her to understand that I have full body paralysis? I can't Do it! I had se