Trouble Standing UP

    • Anonymous
      July 7, 2006 at 10:30 am

      I have been having the greatest difficulty standing. I have worsened over the past month. I had been saying that I needed a distance of 19 inches seat to floor in order to stand from sitting. That distance has now increased to 22 inches. I have a liftchair that I had to have an elevated platform put under in order to get out of it. I am having an ADA bathroom installed in the lower level of my home. The plumber has found a 19 inch comfort height toilet and I have located a 3.5 inch spacer for the toilet seat. I am hoping I will be able to stand from this. My whole existence depends on my ability to transfer from chair to walker to stairlift to chair and vice versa. I don’t want to give up on the walker. I have been trying to get a powerchair, but the insurance company is dragging there feet. I am afraid if I do switch to a wheelchair that I will adapt and be stuck. The doctor told me no more walker, I keep falling and wacking my head. I’ve had so many CTscans I believe my brain is fried. I was wondering if any one had the same problem. I have no lift in my legs if I get below 19 inches. The other problem is that I lose sense of my legs and feet when someone touches me. I can’t explain it but it seems that it takes all my concentration to get my legs to respond. As soon as someone touches me that is all I can feel, their touch. My legs seem to disappear and I melt to the floor. Does this happen to any of you?:cool:

    • Anonymous
      July 7, 2006 at 2:01 pm

      I’m one of the “oldies” on this forum. I’ll try to help with the standing issues.
      I cannot just rise up from a standing position unless the height is 22″ or more. For lower levels, I have to use leverage to push myself up, very low positions is a struggle or I need an “arm up”. My toilet is 19″ high and I am able to get myself up with no difficulty by using a good sturdy arm rail. One that wraps around the toilet is needed, rather then grab bars on the walls. I went through alot of falls (always have a plan in your head about how you can get up) and they stopped after the second year.

    • Anonymous
      July 8, 2006 at 5:41 am

      Welcome rbtro to our family, I am like Liz an old CIDP still using a wheelchair with walker at times. Swallow your pride and give up the walker for a time, you cannot afford to injure youself falling over, your legs can suddenly give way with acute agonising flexion of your knees and causing an effusion in the knee. I used sliding transfer for a long time with a shiney board which I could tuck under my seat and lay it accross to bed or toilet then slide along it to tranfer. The CIDP is affecting the nerve supply to your leg and hip muscles making them very week, Is your doctor recommending more treatment to stop CIDP progressing? DocDavid

    • Anonymous
      July 10, 2006 at 6:27 pm

      Welcome. I’ve been on this forum for almost a year now and find it very helpful in many ways. I am sure it will be the same for you.

      For quite some time I’ve been pushing myself up from a regular chair using my hands on the armrest. Reading yours and Liz’ post I thought I put it to a test and found that I actually still can get up from a 17′ chair without using my hands, same from a 15′ toilet seat, albeit a bit shaky afraid to topple over. I think I better continue using my hands for safety. Of course, I’ll lose practice that way. Anything lower I cannot handle. I can’t get up without some kind of support. I adjusted sprinkler heads in our garden or today I put out herb seeds crawling on my knees. I got up using my cane always afraid to fall. It was quite scary.

      Indoors I use a rollator but lately I am doing without quite a bit since IVIG’s seemed to have helped a bit. I am trying something new now which someone here on the forum posted recently. Instead of looking down on my feet or the floor I focus on an object in the room ahead of me. It takes some practice but seems to help. Outdoors I always use my rollator and in stores I always use an electric chair if one is available. It is a lot less tiring.

      You mention problems when someone touches you. When I walk without a cane or walker for a short distance outdoors, often my wife tries to support me. When she does, I sometimes feel like I am losing my balance. I still have not figured out what the problem really is. Maybe I learned over time how to subconsciously maintain my balance and what the state of my body is. Any new input offsets that equilibrium. I don’t know, just guessing.

    • Anonymous
      July 11, 2006 at 9:11 am

      Thanks everyone. I really appreciate the camaraderie that this forum offers. I am new to the forum and the disease. I have not responded to IVIG nor High dose Steroids. My neurologist is referring me to another at Johns Hopkins. I am awaiting an appointment. In the meantime I continue to weaken. I have the greatest difficulty backing up. I say I have two speeds slow and slower and one direction forward. I can still walk with a walker or rollator forward. It is when I try to backup that I have extreme difficulty transferring my weight from one foot to the other. It feels that all my weight is on my left leg and I can not release it. I have to push on something solid and then I can move it ever so slightly. Only last month I was in PT walking forward backward and side to side on the parallel bars. Now I can’t.

      I cannot not stand up from a seated position without pushing, pulling or being assisted. I have a liftassist seat in the wheelchair(not recommended by manufactuerer). This allows me to stand in the restroom. I’ve looked at alternatives but none appeal. I like the independence of being able to go to the lavatory alone.

      Norb, I’ve felt that it takes every bit of my concentration to get my legs to respond. I have difficulty when anyone touches me. All I can feel is the touch. I lose my legs and everything else. Two week ago, family and friends were constructing a ramp to allow me to get into the house. I was sitting on my rolling walker watching. I had to go, and when I tried to stand I couldn’t. My son can usually assist me by hooking an arm under mine and assist me. While he was doing this my nephew grabbed my other side and tried to help. My legs disappeared and I was dead weight. A crowd grabbed and held me up. I had no sense of my legs until I was able to get them all to let go except for my son and then even him. I retrieved the walker and returned to the house. Everyone wants to assist me and doesn’t understand when I ask them not to touch me.

      thanks for sharing