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  • KAFO vs. tone walking

    I was finally able to take home my KAFO's/walker from PT. I'd taken a break from practicing with them as I'd more or less peaked in terms of the short distance I could travel. I focused instead on building leg strength and awakening pathways. I lost my technique from the lack of practice and felt like I was starting over. I also remembered how much I hate walking with KAFO's on both legs. Got home, strapped on the braces, took four steps and was beat.

    I have fair amount of tone in my legs, intensified by the fact I am starving myself off baclofin. My left leg has increasing strength and I can lock out my knee. On Sunday, I figured I'd humor myself and try muscling myself up to a standing position unbraced. To my surprise, I stood straight up with tone assistance. I've been practising and am up to about 50 ft walking with the walker - unbraced! The more I do it, the better the technique gets. Having those KAFO's off is so freeing. My weakened hip muscles can actually swing my legs and the muscles that do work can actually fire. I would never have known I could do this without a chance try. The only downfall is that if I stop moving, the tone settles and have to sit back down.

  • #2
    Awesome alpentalic,

    Thats how I trained my 1 bad leg to walk on tone, I took the braces off to see what would happen.

    At first I had a kafo and afo on the legs, then just the kafo, then just the afo but I sitll need an AFO on my left leg because if I didnt have my foot would drag.

    I had a question, how are you walking without any brace at all though, can you keep your ankle at 90 degree's?

    I had the same issue you had was if I stopped moving the tone would stop but now when I stand up my leg knows ot hold me with tone and it will. I can control the tone now and do more weigh on the bad leg (with tone) than I can do on the non-tone leg.


    Keep at it and the tone will get stronger and stronger each time you stand, make sure you stay off the baclofin or you'll be back to stage 1.

    Goodluck
    Injured:10-16-04
    C7/C8, T1 incomplete;


    For stalkers convenience:
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    • #3
      Sorry it double posted! AHHH
      Last edited by mr_coffee; 10-10-2007, 10:50 AM.
      Injured:10-16-04
      C7/C8, T1 incomplete;


      For stalkers convenience:
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      Facebook:
      http://www.facebook.com/#!/coryssanchez
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      • #4
        Thanks Mr. C - I'm not using an AFO but I literally just started trying on my own a couple days ago. Every time I practice I learn something new and am just starting to trust the tone. I will have to brace the right though, the tone pattern wants to point my toes down.

        It is just sinking in that at the very least, I can stand up and hobble over to something, it's taken 1y2m to get here. You said it best in another post. Every gain is welcomed with excitment that quickly fades because I want more. So far, I have been able to build on those gains and unlock new ones so I'm fortunate.

        I should also tell you that when I came home from the hospital, I watched your walking videos 1000x over thinking "that lucky bastard" but drew a lot of hope that it could be done and was something to work towards. I know how frustrating it is wanting to be completely restored, but all your videos and advice has provided a lot of hope to me and I'm sure other people.
        Thanks man!

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        • #5
          That was nice of you, I'm glad it helped!

          My left leg also has a tendancey when I walk on tone without a brace my toes will point down. if you want to ditch the kafos and pratice more going free style, see if an ortho can make you just an afo for the foot that is giving you issues. That way you can get a pattern going.

          Another thing I did that helped train my leg to stay straight was I put an e-stim pads on the leg that wouldn't stay straight. So just before I stood I turned on the unit and it would zap my quads making my leg go straight.

          The e-stim until would then shut off for a break, then when it did jsut off I would try to keep it straight till the next zap comes, it was a good mental exercise.

          Keep it up!
          Injured:10-16-04
          C7/C8, T1 incomplete;


          For stalkers convenience:
          Blog:
          http://www.ordealsonwheels.com/
          Facebook:
          http://www.facebook.com/#!/coryssanchez
          Progress:
          http://photobucket.com/albums/b290/swooty/
          My drawings:
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          • #6
            Awesome alpentalic,

            Are you completely off baclofen? I'm trying to do the same. I have a pump and have it turned down so much that it's almost off. I am feeling more tone, but not all the time. When I get up on the stationary bike (schwinn aredyne) my legs stiffen up and I get to stand all by myself until the tone goes away. Man, that feels good being 6'2"!

            Anyway, I'm slowly starting to build strength in my thighs so I can lock the knees. I'm feeling new stuff in my torso and I can sit up taller everyday. I hope to get stronger.

            Pat

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            • #7
              Awesome news! Keep it up! Spasm meds are evil!
              www.ballincolin.spaces.live.com
              www.youtube.com/colinsodyssey

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              • #8
                That is so awesome, and I am sooooooooooo jealous. Keep it up and maybe after you have it down, you can pass your luck and skill on to me.

                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!!

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                • #9
                  Originally posted by patd
                  Awesome alpentalic,

                  Are you completely off baclofen? I'm trying to do the same. I have a pump and have it turned down so much that it's almost off. I am feeling more tone, but not all the time. When I get up on the stationary bike (schwinn aredyne) my legs stiffen up and I get to stand all by myself until the tone goes away. Man, that feels good being 6'2"!

                  Anyway, I'm slowly starting to build strength in my thighs so I can lock the knees. I'm feeling new stuff in my torso and I can sit up taller everyday. I hope to get stronger.

                  Pat
                  patd - I take a 20mg tab before I go to bed at night. One of these days I will try going without, but come midnight I never want to risk losing more sleep than I already do to spasms. Sometimes depending on the morning I'll pop a 10mg to loosen up.

                  I've been using a Total-Gym doing angled squats to help build my legs and that has really helped. I've gotten so used to being 3' tall that standing up in my apartment is a real trip. Get to see what my girlfriend is hiding up there on the top shelf.

                  mr.c - Good tip on the e-stim. My unit just quit working so I have to pick up a new one.

                  mc - I agree. The doc's had me thinking that baclofen was some kind of life blood. I was taking it religously on the hour. Once I missed a feeding and realized not much had changed, I continued to drop the dosage from 80mg+ to present. Exercise has really helped the tone and spasms.

                  Becky - Maybe give it a shot without those braces, I know how you feel about them. Drop your med dose and see what happens. As mentioned I wouldn't have known if I hadn't tried on my own.

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                  • #10
                    Hi alpentalic,

                    That's great to see that your baclofen has gone down. My pump is down to just over 100 ugrams/day and it's interesting to note how little it takes compared to eating it all day. But, as I've lowered the settings I've felt more. At first the feelings are loud (painful), but then as much as a week goes by and it's all good. Some say that it doesn't effect your feelings or strength, but that has not been my experience.

                    Over-all the only real spasms that have been bad are the leg spasms at night when I have to pee!

                    I just finished stimming my thighs as I type! Gotta go to work. Pat

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                    • #11
                      Can you use the Bioness 300? Has anyone used it instead of the AFO? My daughter tried it, but there isn't a distributor at her clinic.

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                      • #12
                        alpentalic,
                        congrats, I also have issues with my toes I was using an afo brace due to the tone but it hindered my hip movement due to how big and bulky the thing is I don't have much strength in the hip so picking the thing up was a real bi***...I was finally told that I did not need to use it and it is alot easier to get the hip swing going..I am able to walk about 150 yards with the use of a quad cane before I am to tired...I can go alot farther pushing my chair, I think that is due to how I walk/ stagger I feel that I have better balance this way plus when I do get exhausted I have the chair right there to sit down on..
                        I have noticed that I have a problem more now with hyper extention of my knee since I have had the pump put in...I am hoping to go back into theropy after I heal up some more..have to see what the doc. has to say though..

                        keep up the good fight!!

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                        • #13
                          Originally posted by mom01
                          Can you use the Bioness 300? Has anyone used it instead of the AFO? My daughter tried it, but there isn't a distributor at her clinic.
                          My sister did a trial of the L300 and it really helped with her walking and dorsiflexion in her left leg. So she went for a PT session for the Bioness L300. Amber currently has the Empi e-stim unit and her PT told her she could do the same thing with the Empi and a heel switch (which she already has and esp because insurance probably wouldn't cover the L300). So we're planning on working w/ her Empi e-stim unit to try to get the same results.

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                          • #14
                            I tried the bioness L300, and it didnt do anything for me. I had too much tone, and my knee went into hyperextention, and the foot everted, instead of a dorsi-flex. So basicaly, my leg was too weak to make use of the technology.

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