Post by deejay on Aug 26, 2009 13:10:43 GMT -6
Hi: My name is Debbie, I am 44 years old and have generalized dystonia. It started with a fall at work where I twisted my tailbone sideways and jarred my sacrum up and out. I waitress ed for another 5 months and the last day my husband had to pry me out of bed to go to work. During that time I had gotten very clumsy, dropping stuff, tripping over my own feet and the pain was relentless. There I went through every specialist, tests and pills that they gave me and nothing was working. My dr. said that the twitching was from taking too many pills and when it came to the point where every time I went to the bathroom I saw blood. I only have 1 kidney that works, so I flushed all of the pills I was taking. Every doctor tried to convince me that I had something different, chipped bone or protein buildup that was irritating the nerve, it was all in my head, or my personal favorite arthritis.
In June of 2008 when I went to bed my legs and hips started bouncing in bed and could not stop it. It scared the hell out of me, I had lost control of my body. My husband had to stop me from bouncing out of the bed. The Chiro that I was seeing at the time had sold his business to another one and the new one thought that I had a brain tumor and wouldn't touch me until I had a brain scan done. I had to be tied down in the machine to get the mri done by that time my body had a mind of its own. I tried to fight the spasms and twitching, I lost, Just left me exhausted and frustrated along with panic attacks, so now I just let it do what it wants and don't try to fight it.
I haven't worked since 2005 and was finally diagnosed with dystonia 3 months ago. I drank a lot some 3 years ago that was the only thing that helped. My husband and children had a really hard time dealing with me, I was so cranky all of the time, most days I couldn't stand myself, how could they possibly stand me. With the constant pain and these episodes it was very easy to give up and lots of times I really wanted to, because of the pain and being bed bound, well jumping off of a bridge seemed like the only answer, but I couldn't walk that far. So here I am, still here. I've been doing lots of reading about this, so far I haven't seen anyone who bounces out of a chair or bed with these attacks. I hate being in public, people stare and because of my crocked walk some have even commented on how drunk I was, I don't like using a cane to walk. It's not bad enough to be embarrassed about yourself without having judgmental and ignorant people standing and judging you about it, that makes a difficult time even more difficult. I know I shouldn't care what other people think, at times it does get to me.
I have found a local support group and am trying new things to get back to a normal life.
The key I have found is to remain positive about all of it, if every day I can find 1 more thing that I can do then it is a victory. Three weeks ago I was walking 8 km a day like normal people, like I used to do and house bound for the last 3 weeks. If I did it once I can do it again.
In the words of rain man:
"Don't judge me because I'm different
We are all different."
Words to live by.
Is there anyone else out there like me?
I would really love to talk to you and anyone else with this disease, how do you cope? What works for you? Is there such a thing as remission? How do you deal with the isolation?
In June of 2008 when I went to bed my legs and hips started bouncing in bed and could not stop it. It scared the hell out of me, I had lost control of my body. My husband had to stop me from bouncing out of the bed. The Chiro that I was seeing at the time had sold his business to another one and the new one thought that I had a brain tumor and wouldn't touch me until I had a brain scan done. I had to be tied down in the machine to get the mri done by that time my body had a mind of its own. I tried to fight the spasms and twitching, I lost, Just left me exhausted and frustrated along with panic attacks, so now I just let it do what it wants and don't try to fight it.
I haven't worked since 2005 and was finally diagnosed with dystonia 3 months ago. I drank a lot some 3 years ago that was the only thing that helped. My husband and children had a really hard time dealing with me, I was so cranky all of the time, most days I couldn't stand myself, how could they possibly stand me. With the constant pain and these episodes it was very easy to give up and lots of times I really wanted to, because of the pain and being bed bound, well jumping off of a bridge seemed like the only answer, but I couldn't walk that far. So here I am, still here. I've been doing lots of reading about this, so far I haven't seen anyone who bounces out of a chair or bed with these attacks. I hate being in public, people stare and because of my crocked walk some have even commented on how drunk I was, I don't like using a cane to walk. It's not bad enough to be embarrassed about yourself without having judgmental and ignorant people standing and judging you about it, that makes a difficult time even more difficult. I know I shouldn't care what other people think, at times it does get to me.
I have found a local support group and am trying new things to get back to a normal life.
The key I have found is to remain positive about all of it, if every day I can find 1 more thing that I can do then it is a victory. Three weeks ago I was walking 8 km a day like normal people, like I used to do and house bound for the last 3 weeks. If I did it once I can do it again.
In the words of rain man:
"Don't judge me because I'm different
We are all different."
Words to live by.
Is there anyone else out there like me?
I would really love to talk to you and anyone else with this disease, how do you cope? What works for you? Is there such a thing as remission? How do you deal with the isolation?
