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  • #16
    Originally posted by dan_nc
    I can related to that -- I hate it when the PT session passes and I feel that I haven't done anything. I was concerned that they would terminate remaining PT since I wasn't improving (insurance reasons).

    Do you also work with an aquatic therapist? You may find some benefit doing aquatic based physical therapy as a different modality. Are you at RIC? They don't have PW at Chicago, but they do have other activities based therapy centers in Chicago area.

    Daniel
    Dan,
    I do not currently do my PT at RIC. I did my acute and first year and a half outpatient at RIC. I do not do aquatic at the moment due to the colder weather coming and the high school pool just isn't sanitary enough for my liking,lol. I'll look into other options. thanks.

    Becky,
    Chicago
    T8-9 according to latest scoring.......
    since 1/3/04

    I am the best at being me. No matter how that happens to be!!

    Comment


    • #17
      Originally posted by alpentalic
      I feel ya'. Day to day, week to week can get tedious. Have someone film you so you can see yourself doing it and have a benchmark to measure progress from. It's taken some people 10+ yers to walk again, I can only imagine the periods of doubt. How are the shoulders holding up - did you give the poor things a break?!
      My shoulders and back are still on fire. I gave them a couple days break but I feel guilty about doing that. Ahh well you can't win no matter what you do I guess.

      Becky,
      Chicago
      T8-9 according to latest scoring.......
      since 1/3/04

      I am the best at being me. No matter how that happens to be!!

      Comment


      • #18
        Hi Becky, I wonder if there are any parks and rec activities that you can participate in. Adaptive bike rides or b-ball, etc. I met one of the employees at a bike ride back when it took 3 people to get me in a bike. He made such an impression when he told me about a head injury he had sustained years before. He said, "Nobody is going to heal you, you have to do it!"

        He's right. It's not easy, but get moving somehow and visualize moving if you can't feel it. Make it a habit for your own health. I think you'll find a way to turn your energy into progress. Take care. Pat

        Comment


        • #19
          Hi Becky, I wonder if there are any parks and rec activities that you can participate in. Adaptive bike rides or b-ball, etc. I met one of the employees at a bike ride back when it took 3 people to get me in a bike. He made such an impression when he told me about a head injury he had sustained years before. He said, "Nobody is going to heal you, you have to do it!"

          He's right. It's not easy, but get moving somehow and visualize moving if you can't feel it. Make it a habit for your own health. I think you'll find a way to turn your energy into progress. Take care. Pat

          Comment


          • #20
            Hi Becky. I am T12 and struggle with KAFOs too. I have had them a year and had so many problems I've barely been in them. It sucks knowing it takes longer to get them on and off than I spend actually in them in PT. It's frustrating. Hell I only wanted them so I could stand u p to do the dishes. I didn't want to go galavanting across the Walmart and I can't even do that so I do understand your pain. PM me if you want we can gripe together or maybe share help in each others problem.
            If you can't handle me at my worst, then you sure as hell don't deserve me at my best.


            Sometimes it is easier to widen doors than it is to open minds.

            Comment


            • #21
              Hi Becky;

              There is a highly recommended alternative SCI recovery/rehabilitation facility in Chicago. It is called Next Steps. Check it out.

              John
              "Hope is like a road in the country; there was never a road, but when many people walk on it, the road comes into existence." Lin Yutang

              Comment


              • #22
                Hi Becky,
                Nothing you are expressing seems strange to me at all, nor does it seem the least bit selfish. As I think you know I have been sitting in this chair for a VERY long time now, and at one time did peer counseling. I can't even begin to tell you the number of people that I saw try braces only to discard them eventually as being either too exhausting or just downright impractical. Please don't berate yourself. The truth is that a chair often offers more opportunity than trying to balance on braces. You can carry things, you can feel safe on slippery surfaces, and so on. Braces were never an option for me, so I hope I don't come off sounding as though I am advocating total wheelchair living just because of that, but I honestly have seen many people at your level who dumped the whole brace concept and have never looked back.

                Comment


                • #23
                  You are not alone!

                  It is completely understandable to become frustrated from time to time and to want abilities that others may have, it's happened to all of us at some point. As a low level paraplegic I'm sure others have looked at you and thought the same thing. I too have been frustrated and annoyed at having to use a brace to walk, and I use only an AFO! It does take time and a lot of work to get upright with or without braces and only you can decide if you have the patience to give the braces a real shot because the truth is that you don't know how functional it will be until some time has passed. You should definitely look into an aggressive exercise program, I've heard good things about NextSteps. Building up your leg muscles is extremely important to making the whole brace thing a lot easier.

                  Comment


                  • #24
                    John and Darkways, I am definately going to look into Next step. Thanks so much for the info. Darkways, you are right about the whole concept of it being functional or not and it definately is the farthest thing from functional at the moment. I think I am a pretty patient person, I just have to be reminded occasionally.

                    Becky,
                    Chicago
                    T8-9 according to latest scoring.......
                    since 1/3/04

                    I am the best at being me. No matter how that happens to be!!

                    Comment


                    • #25
                      Hi Becky, I have KAFO's and they are difficult to put on, due to the design, and move around with. I don't have a clear picture of the issues you are having with braces. Would you elaborate? One of the problems I have when using them is getting past the 'tone' in my upper legs and hips. For about fifteen minutes or so I have to fight the tone to move but then I loosen up a bit and it gets easier. Other times I will get some spasms that pull me to one side or the other, luckily I've not fallen! I would love to get to the point where I can use the braces as addisue said to 'do the dishes' or anything else in addition to exercise.
                      Injured 7-22-06, T-11 T-12 complete. [Holds up cardboard sign] "Will work for returns."
                      2010 SCINet Clinical Trial Support Squad Member
                      Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

                      Comment


                      • #26
                        Originally posted by FasterNow
                        Hi Becky, I have KAFO's and they are difficult to put on, due to the design, and move around with. I don't have a clear picture of the issues you are having with braces. Would you elaborate? One of the problems I have when using them is getting past the 'tone' in my upper legs and hips. For about fifteen minutes or so I have to fight the tone to move but then I loosen up a bit and it gets easier. Other times I will get some spasms that pull me to one side or the other, luckily I've not fallen! I would love to get to the point where I can use the braces as addisue said to 'do the dishes' or anything else in addition to exercise.
                        I found that much of my kafo induced tone came from very tight hamstrings/hip flexors. I'd put them on which yanked on my hamstrings which would ignite the tone. A good stretching routine has helped a lot. I wonder if wearing them for 15 minutes, as you say, in effect stretches out the muscles and relaxes the tone.

                        Comment


                        • #27
                          Originally posted by FasterNow
                          Hi Becky, I have KAFO's and they are difficult to put on, due to the design, and move around with. I don't have a clear picture of the issues you are having with braces. Would you elaborate? One of the problems I have when using them is getting past the 'tone' in my upper legs and hips. For about fifteen minutes or so I have to fight the tone to move but then I loosen up a bit and it gets easier. Other times I will get some spasms that pull me to one side or the other, luckily I've not fallen! I would love to get to the point where I can use the braces as addisue said to 'do the dishes' or anything else in addition to exercise.
                          Yes, that is the problem that I have the tone from my hips all the way through my legs. The only difference is that it gets harder for me the longer that I am standing. After 15 minutes of it I am basically my own vibrating roller coaster ride. I actually was told today that I am being dropped from PT for now since the spasms are still not under control. Well, I'm sorry, I can't help that. It makes me so angry. Now I have to go home and tell my mom that I won't be going to PT anymore and she will shoot me and tell me that I wasn't trying hard enough. I did as much as I could before I got to my breaking point but it still isn't good enough for her. I left a note for my doc for advice but I am still really worried about having to tell her. I know that it doesn't mean I can't go back after I figure out what I can do for this spasticity but she doesn't get that.

                          Becky,
                          Chicago
                          T8-9 according to latest scoring.......
                          since 1/3/04

                          I am the best at being me. No matter how that happens to be!!

                          Comment


                          • #28
                            I'm not a family psychologist but I'd tell your Mom to go shove it up her butt because she has no frikkin idea what it's like to have a spinal cord injury.
                            www.worldonwheels.ca

                            Comment


                            • #29
                              Alpentalic, stretching definately helps! I notice a big difference with a good stretch.

                              Becky, this is my second attempt at a response...the first got killed when I tried to post so I'm leaving some things out. The most important thing I wanted to say was to take a look at Project Walk. Using the spasms rather than dropping you from PT seems like a better approach. I've never been to Project Walk but I use my spasms every day getting into and out of my vehicle to stand for a few seconds. This is just my opinion of course but being involved with the right people can make a huge difference. Take a look around and consider the philosophies of the organisations/people you spend your money and time with.
                              Injured 7-22-06, T-11 T-12 complete. [Holds up cardboard sign] "Will work for returns."
                              2010 SCINet Clinical Trial Support Squad Member
                              Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

                              Comment


                              • #30
                                Hey Becky....I defer to a post by Mr Coffee. He said that when he would get aggervated putting on his KAFO, he would remind hisself that there was a time that he didnt have the return to use the thing. Or something to that effect.... his statement is my motivation each time I get flustered messing with the darn thing. There was a time when we couldnt, or no reason for putting on these PIA add-ons. Now we have a reason, and that reason is we want to walk, to regain what we once had.

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