Steve, I really wish I could help out with the startle problem, but what I experienced that difficulty it was because my spine was still adjusting to the initial trauma. It took the better part of a year and a half before I was able to go out without having noises startle me and causing intense pain in my spinal cord.
I don't know if this will help, but I found getting a low air loss mattress helped me considerably when it came to being comfortable in bed. If you have a stage 4 ulcer I would think you would qualify for one. The legs jumping up and you moving out of position sound like a spasticity problem. That's what my legs and body do when there is something going on. And based on your description it appears as if your discomfort is causing the spasms and then the spasms are causing the pain. I'm just spit bawling here, but maybe some more spasticity medication might help you. Sorry I can't be of more help. I also agree that meditation can be beneficial. It definitely helps me. Quadius On Sun, Oct 11, 2009 at 4:26 AM, Steve Crowder <[email protected]>wrote: > > > *CRY FOR HELP FOR MY STARTLE RESPONSE* > > > > I have a huge problem I need to throw out to you guys. Over the past six > > years, I have developed a severe case of scoliosis, curvature of my spine. > The > > curve of my spine, which used to have me shaped like a banana. Now I am > even more bent. It gets worse every time I sit in my wheelchair. > > > > If my body were allowed to assume its natural shape, > > then it would be excruciatingly painful. So just about everything I do, > from > > lying in bed to sitting in my wheelchair, requires compensatory measures. > In > > bed, I have to roll over on one side of my body, and then back onto my back > and somebody takes really guides my legs and a. > > When I sit in my wheelchair, as I am right about to sit down, I have to > have > > someone guide my hips into my seat, otherwise I sit down in a painful > > position. So dealing with that is an issue in itself. > > > > Here's my problem. I've developed a startle response. I startle at > > anything -- anything. The worst is when I'm out in public. Everything gets > me. The overhead loudspeaker at stores paging people announcing things, > every loud voice, which is almost every voice, children laughing, babies > crying, car horns and alarms honking, you name it -- I get to the point > where I live in a pain, but worse -- my head is turned almost sideways, > which kills my neck (I have a C/3-C/6 fusion) and my only way out is to get > out of my wheelchair > > > > Something is always getting me when I'm in bed, also. Every time it > happens, > > it puts me into the most horrible pain. The very worst case is when I > jump. > > By jump, I mean my body actually moves and my legs go up in the air. Like I > > said, I'm very incomplete and am capable of standing and even taking some > > steps with assistance. But, without going too deeply into the subject, > > bit and I move enough to be placed in agonizing pain. So I need somebody to > > help me work on my startle problem. I have people rolling me like crazy. > > > > A "roll" is when somebody rolls me onto my side and then back on my back. > > a number of steps involved, and if I startle during one of the > > steps, we have to start all over again, which happens extremely frequently. > > I'm wearing everyone out. It happens throughout the night, and when I don't > > get rolled, the pain is through the roof. I need to find solutions to the > following questions: > > > > What do I do to stop? Who should I go to? I have a stage IV pressure sore > that will require surgery very soon, and I'll go nuts in the hospital. > > >
