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My Life With Dystonia
These First few writings, or musings, I guess some would call them are going to be about My Daily life Some of the Struggles that People around do not Even realize we have. Close Friends do not Understand the Daily Struggle.
  
    I was Working at Pioneer telephone and was a Network Technician. The Job was not always fun, But it was better than not having one at all. I was close to getting My CCENT for the techies out there they know what that it but just to say it would have meant very Much to me to get it. I was much like everyone else, but after work I noticed I was exhausted. It was normal at first, I thought, everyone was tired after work Right? Then I began to notice what my fellow employees could do after work. It was amazing to me and I began to wonder. at sixteen years old my sister Got the Disease, but she could handle it better, she was more equipped. I was a man who had to support my family. So I continued. Ignoring the signs of the Disease. Thinking if I ignore them it will go away it can't be what i know it might be. Humans tend to think we are invincible. Believe me as I take you Down this Journey Consider What could happen to you and what would your family do, more importantly what will Your family have to go through, and for me that is the hard part. Caretakers mostly family members get forgotten but they share in the disease. Unfortunately even Friends and People you thought were close no longer want to "Hang Out", I guess is the term nowadays, so you begin to feel like the those with leprosy who had to cry out "Unclean" every time they went down a street. Like I said the first few will be things I have noticed about the people around me then I can get into the Daily life of one who has this thing called "Generalized Dystonia"  I will Put up videos on my youtube Channel Just so everyone can see it is not fake, or made up, or something that I can Just stop when I want. and Hopefully My Wife, Who is Caretaker, Will Post here, and I would like my sister to share some things as well, and My Father and Mother I would like them to share. I know it Probably has been hardest on them. This Disease has affected the whole family structure, and I will show it. as we share this Journey together. Please feel free to ask questions or post comments.

Comments

  1. I think it’s easier for women, especially if we believe the man is the breadwinner. I think only my hubby knows the struggles I faced when I walked into the hospital only to leave in a wheelchair. I then had to quit my job, sell my car, lose so many I thought were friends, and watch my parents worry and suffer as we tried to get answers. I wasn’t well equipped exactly. I just tried to hide everything. I’m not sure it was the best way to handle it, but it was the only way I felt I could handle it...andyes, I believe mommy and Daddy have suffered the most as our family has walked this journey together....and, yes, the leprosy analogy is a great way to put it. I treasure my family!

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  2. I am Rachael and Joshua’s mother. I have had health problems my entire life which have become progressively worse. When Rachael became really ill when she was 15, we began the long journey with trying to find a diagnosis for her. We have lost count of all the doctors that we saw only to tell us that it had to be a mental problem. We came to the point twice in that journey when we were told that they wouldn’t do anything else until we took her to a psychiatrist. We know our daughter well and knew that what they were saying about her was false. In my discussion with the psychiatrist, he said that he was 80% sure that she had a Conversion Disorder but that he would not try to treat her because in so doing he would destroy her. Our family doctor refused to see her again saying that it was all our fault. I asked the psychiatrist what he would do if she were his daughter and he said he would take her to the Mayo Clinic, but that he could afford it. We took her to the Mayo Clinic and, after a week of tests, were told that her symptoms appeared to be more Dystonic than anything else but they couldn’t tell us for sure. A few years later our other daughter developed much the same symptoms in her late teens. It was recommended that we take her to see Dr.Ahlskog who was the head of the movement disorder clinic at the Mayo Clinic. By that time they had developed a test there to diagnose Dystonia. She tested positive and they requested that we send our other daughter back for the test. She also tested positive. It was a bittersweet day for this mother. I knew what they had but there was no cure or really any effective treatment. Since our son Joshua was older we thought that he would be OK but as you can see, we were wrong. Rachael started having the Dystonic Storms first and then Joshua. Our younger daughter has similar symptoms as does our youngest son. His is more Cervical Dystonia but he also has other symptoms. After the girls were diagnosed, I was given the same test and the diagnosis was familial generalized Dystonia. Since then I have also been diagnosed with RSD. The most heartbreaking thing as a mother is knowing what my children are suffering and being unable to help them. We have been on this journey with our children for 26 years and will continue to pray for and try to help our children as long as the Lord leaves us here. We will not be able to stop the tears even though we trust the Lord with our children and know that our Heavenly Father has a purpose.

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