Living With Dystonia

   One Very new symptom for me to understand was stress. before I got this disease I really did not get "stressed" about things because I didn't understand it. I would go through my day and whatever would happen would happen, and I would leave it at work, and I would come home and my wife would be under stress, and I can remember asking her why? This disease gave me the answer I was looking for in that category.    Things that most people would not consider stress I , or should I say my mental state has caused me to see as stress, and when a Dystonic patient has extra stress added to there daily routine they are likely to feel worse and have more storms. For me any type of argument is hard for me to take if it is real, my brain does not deal with it well, and I do not know if this is the case with my other siblings or if this is just me. I can tell if 2 people are playfully arguing, but when it gets into a heated discussion my body brain goes crazy, and that is when I am

   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

Summer time, for most people this is sand sun and fun, but as you have figured out if you have been reading this blog I am the exception to every rule that there is. Summer time is the hardest time of the  year because I cannot take the heat, by about noon I can only lie down and do a few things because of the heat. My skin feels like it is on fire, and when the sun hits it it is almost a boiling feeling on my skin.   With the new medicine the doctor gave me for the skin problem has come a new phenomenon, I wake up early which is a blessing because I can enjoy a little bit of the day before the heat sets in. Last week I was told we would have a cool wave and it would be in the 80's for most people that is fine, but it really doesn't matter to me if it is is 80 or 100 it still feels the same when going outside. Sometimes in the late evening after dark I can go outside and just sit which is nice.    I also have started a new symptom that about 2-3 O'clock in afternoon I wil