Today isn't my first day blogging but its close. One of the reasons I think this blog is important is to help other people who have the problem I do. Most people who have it, have just recently acquired it and have no idea how to cope with it. The problem is Essential Tremors or Genetic Tremors. If you shake, never been diagnosed with tremors, I refer you to the following website: http://www.essentialtremor.org. This site will give you the information to determine if you might have Essential Tremors and get you whatever help you need.
I've been shaking along life since I was eight years old. I may have had it even before eight, but my memory does not indicate it. I'm almost sixty-three years old now. I believe the severity, not the disorder and the early onset was because of an overdose of a combination of medications beyond adult dosages in the early 1950's. Originally, doctors told my mother the tremor would turn into Parkinson's Disease and I wouldn't live past eighteen years old. They never thought I would write my name, or do many of the things I have done. I remind the world of doctors, never tell a child they can't do something because they will try to prove you wrong even if it is hazardous to their health. I'm one that succeeded but not without a price. Unfortunately, they told mom in a room where I was sitting outside the door and heard every word they said. I actually remember at the time making a decision to prove them wrong.
The truly sad part, I think my parents had more difficulty with the diagnosis than I did. Children tend to see themselves as invincible, and I know I did. My parents saw me as fragile, and they were embarrassed by me. My mother made me more of a hermit than was necessary and did a lot of self-esteem damage.
The tremor in my voice was thought to be a vibrato by my music teachers. Thank goodness I had a pleasing voice because my singing voice kept me from being a prisoner in my home. In fact, at one time everyone thought I would become a professional singer, and I did for a very short time. But the stress of singing and performing made the tremor terrible and eventually, I gave it up permanently except at church.
Doctors had me on the strongest tranquilizers available from the beginning until I was eighteen years old. They had said I wouldn't live past that time. When I did, I threw out the pills. Why? Because tranquilizers gave me the feeling of living in a plastic bubble. I knew I was addicted to the pills, and I knew doctors expected me to stay on them for the rest of my life. But I was willing to put my life on the line to be free of them and the doctors. I felt I had discovered ways to cope. I'm not grateful for the withdrawal from the tranquilizers nor the side effects I experienced on them. Some ways I coped were highly successful, others failed miserably. I will be forever grateful to the people who helped me along the journey of life.
Some things, for those who have my condition, can not be accomplished by yourself. Don't be ashamed to ask for help.
Unlike most people who acquire tremors, I don't remember ever being without tremors, or having any period of normal living. Maybe I'm the lucky one, because those who I've met who acquired it in their fifties, which is the normal time for tremors to appear, seem to be disabled more than I even with a less severe tremor than mine. They knew a time when they could participate in sports, run and do strenuous exercise. Unfortunately, I've never been able to do any of those things without uncontrollable shakes for sometimes days. All my life, extreme temperature changes, overheating and chills, have caused uncontrollable shakes. Emotional stress has been one of those things I've had to learn to control. When my father died in the late 60's, I had to learn to control my emotions or become totally unproductive even to the level of feeding myself. In fact, stress elimination has been necessary for me since the beginning.
If you haven't had the experience of throwing a plate of food on the floor in a fine restaurant, wearing a hot cup of coffee, used both hands to accomplish simple tasks, smashed anything except the nail in the wall, failed to remove a splinter from your child's hand, scrawled your name all over an important document, sliced your fingers trying to slice a tomato, or many other tasks complicated by tremors, you may have a simple case of nerves. I've cried many times over the complications tremors has caused. If you haven't had a stranger insist you calm down and you wish they knew what they were talking about, you don't want the experience. I've seen better and worse experiences than the ones I've just described. Many were extremely painful physically, mentally and spiritually.
The adults and children in this world in general, based on my experience, have very little understanding or tolerance for any disability. In my opinion, it is easier for the world to exclude the handicapped, pity them, or throw money at them than to learn to deal with them and help them to be productive members of society. I've found that statement especially true when you have what is termed "an invisible handicap." And never, never appear to have a mental disorder or even hint of one. The world really likes to ignore mental issues and they hope those with them, will just fade away. Many times the issues have nothing to do with mental disorders just the perception of those making the judgments. I make the issue over mental disorders because insurance companies discriminate on coverage for mental issues and usually pay only half of what they pay for physical issues. I wonder sometimes how the world thinks with the experiences they go through that they haven't been affected mentally by those experiences.
My determination to be medicine free worked for many years afterward. I don't recommend my journey to anyone, but it is my journey. Some methods of coping worked well, others didn't work at all. According to more modern doctors than those back then, I am a walking miracle, even before I had brain surgery in 1999 for the condition. The surgery was only for the right side of my body. Don't get me wrong, I've not been cured, but I have learned many techniques that work for me. How long I'll be able to use those techniques, who knows? Some techniques I found by myself, others were recommended by other means.
If you have the condition, like I do, and you haven't had it very long, you know how difficult it can be. I've talked to people who haven't had it as long as I have. They are completely frustrated with it, and some have even contemplated suicide. I'll never believe suicide is the answer to any problem. My daughter has inherited the tremor from me, just as I inherited it from my father. She is currently under a doctor's care and taking medication and she is only in her late 30's. One day my son may realize he has it too instead of thinking he is just nervous. Stay tuned to my blogs, and when I'm ready to publish the book about the journey I've taken, I'll let you know.
If you are a book publisher, and you think you would like to publish my book, I would be happy to talk to you. However, I'm not looking for a publisher who wants me to pay the costs to publish. I want a publisher who not only prints the book, but does the publicity, promotion, etc, and pays a royalty. I might consider an eBook, but for now, I'm not ready.
It is not my desire to tell you all my story in blogs. However, if anyone with this condition wants to know how I managed to survive all these years without heavy sedation, I'll be happy to give you some incite and survival support if you contact me by email at cotruelove@gmail.com.
Until the next time I'm blogging take the following quote with you:
"You can tell the depth of a man's ignorance by his belief in tragedy and injustice. What the caterpillar calls the end of the world, the Master calls the butterfly." Richard Bach
I have done some editing to this today, May 31, 2016. Some things were no longer applicable. I do not maintain a website.
I've been shaking along life since I was eight years old. I may have had it even before eight, but my memory does not indicate it. I'm almost sixty-three years old now. I believe the severity, not the disorder and the early onset was because of an overdose of a combination of medications beyond adult dosages in the early 1950's. Originally, doctors told my mother the tremor would turn into Parkinson's Disease and I wouldn't live past eighteen years old. They never thought I would write my name, or do many of the things I have done. I remind the world of doctors, never tell a child they can't do something because they will try to prove you wrong even if it is hazardous to their health. I'm one that succeeded but not without a price. Unfortunately, they told mom in a room where I was sitting outside the door and heard every word they said. I actually remember at the time making a decision to prove them wrong.
The truly sad part, I think my parents had more difficulty with the diagnosis than I did. Children tend to see themselves as invincible, and I know I did. My parents saw me as fragile, and they were embarrassed by me. My mother made me more of a hermit than was necessary and did a lot of self-esteem damage.
The tremor in my voice was thought to be a vibrato by my music teachers. Thank goodness I had a pleasing voice because my singing voice kept me from being a prisoner in my home. In fact, at one time everyone thought I would become a professional singer, and I did for a very short time. But the stress of singing and performing made the tremor terrible and eventually, I gave it up permanently except at church.
Doctors had me on the strongest tranquilizers available from the beginning until I was eighteen years old. They had said I wouldn't live past that time. When I did, I threw out the pills. Why? Because tranquilizers gave me the feeling of living in a plastic bubble. I knew I was addicted to the pills, and I knew doctors expected me to stay on them for the rest of my life. But I was willing to put my life on the line to be free of them and the doctors. I felt I had discovered ways to cope. I'm not grateful for the withdrawal from the tranquilizers nor the side effects I experienced on them. Some ways I coped were highly successful, others failed miserably. I will be forever grateful to the people who helped me along the journey of life.
Some things, for those who have my condition, can not be accomplished by yourself. Don't be ashamed to ask for help.
Unlike most people who acquire tremors, I don't remember ever being without tremors, or having any period of normal living. Maybe I'm the lucky one, because those who I've met who acquired it in their fifties, which is the normal time for tremors to appear, seem to be disabled more than I even with a less severe tremor than mine. They knew a time when they could participate in sports, run and do strenuous exercise. Unfortunately, I've never been able to do any of those things without uncontrollable shakes for sometimes days. All my life, extreme temperature changes, overheating and chills, have caused uncontrollable shakes. Emotional stress has been one of those things I've had to learn to control. When my father died in the late 60's, I had to learn to control my emotions or become totally unproductive even to the level of feeding myself. In fact, stress elimination has been necessary for me since the beginning.
If you haven't had the experience of throwing a plate of food on the floor in a fine restaurant, wearing a hot cup of coffee, used both hands to accomplish simple tasks, smashed anything except the nail in the wall, failed to remove a splinter from your child's hand, scrawled your name all over an important document, sliced your fingers trying to slice a tomato, or many other tasks complicated by tremors, you may have a simple case of nerves. I've cried many times over the complications tremors has caused. If you haven't had a stranger insist you calm down and you wish they knew what they were talking about, you don't want the experience. I've seen better and worse experiences than the ones I've just described. Many were extremely painful physically, mentally and spiritually.
The adults and children in this world in general, based on my experience, have very little understanding or tolerance for any disability. In my opinion, it is easier for the world to exclude the handicapped, pity them, or throw money at them than to learn to deal with them and help them to be productive members of society. I've found that statement especially true when you have what is termed "an invisible handicap." And never, never appear to have a mental disorder or even hint of one. The world really likes to ignore mental issues and they hope those with them, will just fade away. Many times the issues have nothing to do with mental disorders just the perception of those making the judgments. I make the issue over mental disorders because insurance companies discriminate on coverage for mental issues and usually pay only half of what they pay for physical issues. I wonder sometimes how the world thinks with the experiences they go through that they haven't been affected mentally by those experiences.
My determination to be medicine free worked for many years afterward. I don't recommend my journey to anyone, but it is my journey. Some methods of coping worked well, others didn't work at all. According to more modern doctors than those back then, I am a walking miracle, even before I had brain surgery in 1999 for the condition. The surgery was only for the right side of my body. Don't get me wrong, I've not been cured, but I have learned many techniques that work for me. How long I'll be able to use those techniques, who knows? Some techniques I found by myself, others were recommended by other means.
If you have the condition, like I do, and you haven't had it very long, you know how difficult it can be. I've talked to people who haven't had it as long as I have. They are completely frustrated with it, and some have even contemplated suicide. I'll never believe suicide is the answer to any problem. My daughter has inherited the tremor from me, just as I inherited it from my father. She is currently under a doctor's care and taking medication and she is only in her late 30's. One day my son may realize he has it too instead of thinking he is just nervous. Stay tuned to my blogs, and when I'm ready to publish the book about the journey I've taken, I'll let you know.
If you are a book publisher, and you think you would like to publish my book, I would be happy to talk to you. However, I'm not looking for a publisher who wants me to pay the costs to publish. I want a publisher who not only prints the book, but does the publicity, promotion, etc, and pays a royalty. I might consider an eBook, but for now, I'm not ready.
It is not my desire to tell you all my story in blogs. However, if anyone with this condition wants to know how I managed to survive all these years without heavy sedation, I'll be happy to give you some incite and survival support if you contact me by email at cotruelove@gmail.com.
Until the next time I'm blogging take the following quote with you:
"You can tell the depth of a man's ignorance by his belief in tragedy and injustice. What the caterpillar calls the end of the world, the Master calls the butterfly." Richard Bach
I have done some editing to this today, May 31, 2016. Some things were no longer applicable. I do not maintain a website.
May 24, 2021
It's been a long time since I posted to this blog. I haven't learned anything new about blogging and that is my own fault. Many things have changed since I posted last. For now, I'm going to learn how to improve this and then try again to make this a successful blog.
