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

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 go...

  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 an...

    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 y...

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 the...

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 on...

  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 ...