Living With Dystonia

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

Went to my Doctors Appointment yesterday. He asked if i had any new symptoms since I was there last, I chuckled, with this disease there are always new symptoms things you never expect to happen.  Like a couple of weeks ago my legs just gave out I grabbed a door and went sprawling into a bedroom, who saw that coming. I have had a muscle in my back that has been twisted for about a 2 weeks goes from my back down to through my leg. So I never can describe all the new symptoms that I have had because there are always new ones and I do not remember them all.    When I went on disability I had to take on medicare as my primary insurance, and they do not pay much found that out when my doctor told me what my balance was for appointments going back to May, and I went on Medicare in April. So now we have to try to come up with the money by the end of the year for the remaining balance for the Doctor.   Meanwhile our car is in the shop again, which makes 10 times this year. I think it has be

I had to go on disability three years ago today, and I was proficient in PHP, CSS, Python, Helped schools with WordPress issues, and set up and designed networks using DHCP  and also DNS worked with them helping with web design and front end and all of the backend work as well    Dystonia does not allow me to use those skills that I worked so hard to perfect, and it feels like all the time and effort I put in was wasted because now I can do it if i could do it. There are some days that I am fine and feel like I could go back to work and resume right where I left off and then there are other days that I couldn't     This is mentally taxing and discouraging knowing that you can do something, but not get the opportunity to do it. I actually loved what I was doing, and it was providing a decent living for my family, and now I cannot. I feel I have let them down because I am supposed to look out for them and there well being, but with everything getting so expensive I am not sure how

     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

 One of the things I do not like talking about, but is real to Patients with Dystonia is the Financial problems that come along with the disease. This problem brought about my depression, anxiety, and feeling of worthlessness because I could no longer provide for my family. It is not a permanent vacation. I want to make that clear!   Believe me, the last thing that I wanted to do was rely on the government to provide for me and my family, and I never would have guessed at 42 I would be disabled and not able to work. I have been asked why I cannot work from home, and the answer is an easy one, because I do not know what days I could work and what days I could not work. I can have a decent day one day and a bad day the next, or I can go from having a good hour to my brain starting to misfire and the rest of the day I cannot do much of anything, and sometimes one moment I am normal and the next I am having a Dystonic storm it cannot be predicted, and getting people to understand this

 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.  

One of the hardest things with Dystonia is trying to know when you can go out with the family and do something, go somewhere or for how long. I know for most people if they want to go to get something or go somewhere they can hop in the car and go without a second thought, but for me that is not the case. We have to look at the weather forecast to see if there are going to be any storms we have to know how much noise will be there what kind of acoustics will the room be in, and for some reason when we ask these questions some get offended and tell us that if we do not want to come then don't, but we are not trying to find an excuse not to come we are trying to find out if it is a possibility. Sometimes it is and sometimes it is not, and sometimes we do not know so we give it a try.    for example I had a good week a couple weeks back and my wife had some things to do so we decided that I would go, and we always know the risk of my having a storm in the car, or not being able to

The Mind of a Dystonic patient is very different from a normal one things that normally would not bother other people, they do bother me.    I had another emergency visit to my ear doctor, I had seen him only three weeks ago, I had another ear infection it is the 6th one this year and the year is not done. He said, like so many other doctors before, that there is nothing he can do to prevent the infections i just have to get to him as soon as I feel one coming on. I get fungal infections in my ear because of the neuropothy. It does not matter how hot or cold it is outside I sweat, and my ear canals sweat and cause the skin to get infected, and then I get shooting pains up the side of my face. This is all to familiar the reason I am on Disability is because I had a staph infection in my left ear from which I have never recovered. He put a wick in my ear with a steroid and anti-fungal cream to kill the fungus in my ear, that is very painful I might add.    When this happens my brain

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

 Today my anxiety is at about Level 9 not sure why, but then again there never is a understanding of why things happen, and that was conveyed by my doctor yesterday, He said "your brain is wired differently than anyone else " so I am uniquely and wonderfully made although some would argue about the wonderful part.    It is frustrating to go to a doctor and have them tell you that there are no answers. They do not know why I cannot feel electricity, or why I have storms at different times, or why my muscles twist and move at random, why anxiety comes with this disease, but the one thing he did tell me is that I am one of the most resistant people he has ever met to modern medicine, and that is because of the way my brain is wired, I picture little black and white wires running through my brain. is what he says.   today I cannot figure out what is in my head I just feel trapped inside of it and not able to make sense of anything going on. I cannot take what is going on in my

  I know that this title may be weird to some of you and that is understandable, but it is true I fight with myself mentally most of the time, there are sometimes that it is worse than others, but it is always there.    The fight always seems to be what my body thinks I can do and what my mind thinks I can do. I will never forget when I went back to the doctor expecting him to release me to go back to work and he didn't. I fully expected that I was going back to work and nothing would change, and I still and persuaded sometimes that this whole disease is something I made up somehow I should be able to stop the tremors, and resume a normal life, but the doctor said my eyes told a different story I really wasn't there. I had times when I couldn't remember what the doctor had said and I was stunned when he told me I was not cleared to work, or was I.    I have times where I doubt this whole Dystonia thing is real, and I need to get back to work like I am supposed to. Then

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

   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