There area actually many types of Dystonia on which the medical field in doing studies. Early 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, although they are in the same category of medicine.
With research also comes the possibility that if a new drug comes out you may have to be a guinea pig for that drug, but the way I see it if it will help some of my nieces or nephews that may or may not get the disease, no one really knows, I would be more than happy to give it a try. At this point what makes the disease so unpredictable is the gene may be present, but no symptoms are shown usually there is a trigger for the gene to become active.
The gene be came active for me after I had a long bout with a serious bacterial, and viral infection at the same time. I was able to cope and still work until the last set back which was in October of 2016. I ended up in the hospital with a staph infection in my ear, and I have since not recovered. That is when I had to go on disability, and that was one of the hardest things I have ever had to do. I want to work. I am not lazy and just sitting at home collecting a pay check, besides it is not much of a pay check especially with drug prices as high as they are.
There is a lot of research going on and just like any other disease that has no cure it is just research and it will be long after I have departed this world before they have a cure.
Coping with the disease is not easy I have better days than others, and like anyone I get discouraged and frustrated. sometimes we do not have enough money to pay certain bills so they have to wait until I get paid again and then I can pay them, but then you have the late fees and everything that goes along with it.
God has a purpose and a plan for my life and right now this is it, and I do not know if it will always be this way, and if it is I, with the Lord's help will have to learn to be content. As with most things that is easier said than done.
Sometimes, if I meet you I may come across as upset or angry or you may feel like I have snapped at you for no reason, and the fact is I may have, but do not take it personally. I cannot control those things sometimes. I do not mean to come across in that manner, but it happens so if I do just let me know believe me I will be more than happy to apologize. I have done it before and will do it again.
If you keep up with this blog I appreciate it thanks for reading and sharing in my Journey. It is not an easy one, but whose is? there are many who have a harder time than I. You can follow the blog by clicking the follow button in top right corner or you can subscribe to it by clicking the subscribe page at the top of this page.
I entered a comment a while ago but it is floating around cyberspace along with the others that I have left. As usual I did it wrong so it didn’t stay here. My place here is entitled Mother ( Google). . Either my eyes see it wrong or my brain - what there is of it) sees Mother Goose. This Dystonia that we have is so weird that when I have an appointment with the neurologist I always get the feeling that he wishes he had taken the day off. Our first neurologist declared that he didn’t want to see any of us any more and my pain management doctor asked me to do him a favor and find someone else before he lost his medical license. We managed to find one doctor to replace those two and are wondering what we will do if he fires us. We have been fired by 3 doctors now. I have never figured out how that works because we pay them but I am not smart enough to figure that one out. We all have generalized Dystonia so it can and does affect anything it wants to any given day or the next minute. We try to keep a sense of humor about the whole mess but it is easier to do with myself than with my children. I try to reserve my sorrow for them and their families. That is okay because they feel sorrier for me than for themselves. We should not have sorrow for our problems or theirs but that is the Old Man taking over. Fortunately for me, the Holy Spirit has given me much more peace than I have had in the past. He gives more grace as circumstances change for what I would call the worst but the Spirit knows is for the best. The doctors and scientists don’t know what we have or how to fix it. The Lord knows both. All of the things that Joshua says are true. Sometimes I don’t know what I want to say or what I just said. Fortunately the Lord has given me a wonderful protecter and corrector. Sometimes I can’t think of a word so we play charades until I remember the word or forget what I was trying to say. He knows about all our troubles and delivers us out of them all. Mother Goose loves you, son.
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