Dystonia Support Group

Hello everyone...im fairly new here...like many I too am facing a load of life challenges...one major challenge I face is that I too have a type of cervical dystonia...torticollis, etc...never really talked to anyone about it before...i've been hiding in the dark about it...only people who are the closest to me know about it...it's been a hard and scary road for me...i guess i was always ashamed and embarrased to unload about it...lol..anyway i've had it for many many years...i dont think I was born with it although as a young child I started developing unusual problems with my neck area...I remember as I got older feeling very strange and indifferent from everyone else..i knew there was something not normal about it because my neck area never felt comfortable...i think it may have happened after certain falls and injuries i've had since I was very small....right now it has gotten to the point to where I just simply sometimes cannot do anything anymore...it only got worse as the years have gone by...it's been years since i've been unable to drive, etc...it gets very difficult to manuever my head from left to right and vice versa....also im a single mother of a child with cerebral palsy and is unable to walk, etc...although i know i am a great mom i feel sometimes I would be a better mom for my son had I been able to do things more with him...due to my condition as well, i have not been able to...what i'm trying to say is i hardly ever go out...i'm almost always indoors...simply because I cannot... since it's just me and my son alone it gets really hard...sometimes the pain is really bad...i really dont know what to do...since my little guy is growing ive had to struggle more....poor thing needs to be lifted, carried, etc and now he's almost 11 yrs old...all this doing everything alone has been taking its toll on my neck and back muscles, etc...there are times i can do nothing but just grin and bear it...ive gotten so accustomed to the pain...my neck is usually turned more to one side....i really dont know what to do...ive had drs in the past...mostly chiropractic though...i dont know if what they did made it any worse...but all the wear and tear on my body has definitely worsened it...also due to having been in two SERIOUSLY DANGEROUS physical, mental, and emotionally abusive marriages I think it really heightened the problem...the first marriage I was in was to a highly addicted drug/alcohol user...one time he completely twisted my neck all the way to the side till it made a popping sound...also he used to throw me in and out of a highly speeded running cars...u can imagine what that's done for my nerves over the years...i have over acting adrenaline as a result...it's horrible...his continuously hitting my head against walls etc caused even more problems...of course the migraine and anxiety/depression makes it even more....i only take meds for those too...since i need to be able to care for my son and always be in alert state of mind i choose not to take other meds...main reason they have never helped with the problem...only worsened it...i did get to a phys med dr here but he said my condition was so bad that my shoulder has also extended and that there was nothing more left to do for me besides surgery really otherwise injections(which id rather not due to knowing what it's done to my son)...i recently got divorced for the second time after my son's father left us back in 2005....he has a terrible alcoholic addiction too...let me tell u...it's been hell...never been easy...thats for sure...dealing with that too and the second divorce etc has not been easy...anyway hope someone out there after reading this will be able to reach out to me...God knows I need for someone to...
Posted on 07/18/08, 10:07 am