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Looking for C1 C2 walking quads

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  • Looking for C1 C2 walking quads

    I am once again an oddball, a c1 c2 walking quad. Are there others out there?
    My recovery has been very fortunate, walking 5 miles and riding a bicycle 25 miles, at a year post injury. However, my stamina seems to have plateaud and just sitting up tires me, I think because of tightness in torso, shoulders and neck. Have others had similar experiences? Has the stamina improved? Thanks.

    C1/C2 walking quad, SCI from 4/2010

  • #2
    Hi Cajun, wow, you've made tremendous progress! I'm an L1 and L5 at 11 months and still need to walk with a cane.

    As you recover, you're likely to experience plateaus along the way. Some can be short and some can last quite a while. It's hard to say whether you've reached a permanent plateau in your stamina or not. The only way to know is to keep up with your therapy and exercise. The improvements may be so small that you don't notice them right away, but they may add up in the end.

    If you can walk 5 miles and ride 25 miles, that's a huge accomplishment and seems to indicate that your stamina is at a high level already. I don't know that any of us can expect to return to the level of function and strength that we had prior to our injuries but if our recoveries can lead us to a reasonably active and healthy life, that's something to celebrate!


    • #3
      I am a c 3/4 Walking Quad. I did not get as far as you but have some common symptoms. Your only choice is to keep working until you don't see any improvement for an extended period of time, and then you will know. I did see some small but nevertheless important improvements after one year and even a few more after two years.

      In my case, I had less spasticity and fatigue after I stopped heavy exercise (after reaching a plateau). I suggest your do constant stretching of your upper torso and shoulders. It helps the spasticity and preserves function.
      2012 SCINetUSA Clinical Trial Support Squad Member
      Please join me and donate a dollar a day at and copy and paste this message to the bottom of your signature.


      • #4
        Hi Truly,
        Thanks for the answers. I have been very fortunate in my recovery. It seems that all of my muscles have working nerves. Walking 5 miles and riding 25 miles is a lot, but before SCI I was a runner, running 15 miles in the foothills often, and a mountain biker, ready for 5 hour rides. I'm just hoping to keep progress going. Progress for me seems to stop until just about the time that I get frustrated. I had not increased my walking distance in four months, and then just after starting this thread I had another breakthrough.
        Good luck to you.
        C1/C2 walking quad, SCI from 4/2010


        • #5
          Hi swh2007,
          Thanks for your experience. I will keep working hard, and I am keeping a diary to help me see the gradual changes.
          C1/C2 walking quad, SCI from 4/2010


          • #6
            Hi Cajun,
            I am a incomplete C5 going on 34 years. I have paralysis issues with everything below the deltoids and walk with forearm crutches.
            I was injured at 16 and improvement continued into my 30’s. I plateaued at that level for roughly ten years. I turned 50 last year, with general wear and tear over the years and the fact of just getting older things seem to be slipping a little. After a long day of walking all the muscles in my body are in knots!
            After intense physical activity it takes a couple of days to recover and get back to normal.
            I have taken up swimming the last six months and it seems to help loosen up muscles/joints and help with overall muscle tone.

            I agree with swh2007. Stretching is pretty much mandatory daily activity for me.

            All in all it sounds like you are doing very well.
            1977 - C5 ambulating Quad


            • #7
              Hi Cajun:
              I am a C2-T2 injury. 4 years post. I run over 5 miles a day. Hike 15+. I have to be careful though, because if I push it, my legs will start giving out on me and I will fall. I was a runner before my injury as well. Where I used to run 15+ miles at 7.5 minutes each, I now run 8 miles at 15 minutes each. Much, much, slower as you can see. When I pick up my speed I fall, so I am unsure how to overcome it, but I’m still trying.

              You should add yoga to help with the tightness in your torso, shoulders, and neck. I have found it very helpful.

              I do have a lot more fatigue now. I just feel tiered all the time.

              Good luck to you.


              • #8

                Your problems may be sensation rather than strength. Also shoes severely impede locomotion. Have you tried without.


                I am incomplete mostly T12. I have weak quadriceps, no proprioception and tibialis anterior on left and can walk, but can't run at all. If am also stuffed in the dark as can't see my feet. As I can still feel pressure I am much better without shoes, but still can't run.

                You need a lot of muscles to run.


                • #9
                  Your problems may be sensation rather than proprioception and tibialis anterior on left and can walk, but can't run at all. If am also stuffed in the dark as can't see my feet.

                  This is how I got my injury. I have severe stenosis from C-4 to T-2. I could never walk in the dark because I don't know where my feet are and fell off the sidewalk and hyperextended my neck.

                  Walking is very tiring and the muscles do not get stronger with exercise but instead get weaker with repetitions. Dr Young explained it as a lack of myelin problem.

                  I sort of describe it as a lack coordination problem. The more I use the muscles and try to push them, the less coordinated I get and then falls happen. It doesn't tke much to "drain" muscle strength. Just a few reps of any exercise will cause this to happen. Forget about running, the muscles don't get the message to move fast enough and a face plant is the result.
                  Anything worth doing, is worth doing to excess


                  • #10
                    Ryan is still making progress toward being a walking Incomplete C-2 with TBI. In addition to the SCI/TBI he sustained in the accident, he also crushed both legs. Unfortunately, those nerves could not be stimulated for too long after the accident. He has titanium rods and plates from hip to knee and from hip to ankle so e-stim was not and has not been a viable option for waking up those muscle movements.

                    Ryan walks across the therapy pool with no assistance (other than leg weights). The range of his knees (that are not) is increasing over time and therapy. He is two years+ post injury and still making progress in a ladder manner (no measurable progress -the TBI retraining happens-and then a leap is taken). He is leg pressing 140# on a regular basis for several sets and has improved in his ability to straighten his legs.

                    He did not get to attend his HS graduation due to rehab but plans to walk for his first college diploma (plans on medical school to be a primary care doctor and physiatrist for other SCI patients-with research and teaching on the side). He has viewed professionals telling him that he cannot reach a goal as a personal challenge to make them eat their words. He knows that since he has the holy grail of SCI (bladder and bowel control), and is making progress toward walking, the rest of the story has yet to be written.--eak
                    Elizabeth A. Kephart, PHR
                    mom/caregiver to Ryan-age 21
                    Incomplete C-2 with TBI since 3/09


                    • #11
                      Hope he regains strength but he can do anything he sets his mind to- might bea little harder but not impossible.
                      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.


                      • #12
                        Ryan knows that he will never be the kid who left for school that morning but he knows that to maximize his potential, hard work is involved. As long as he continues to make progress, he feels more is possible. He knows the day will come when the stair no longer steps but that day has not arrived. He has shown that the window for recovery does not automatically close at at certain date post injury. Every person is an individual and the road, particularly for incomplete injuries, is a unique one. Attitude and determination go a long way. Without, Ryan would have given up a long time and much function ago. He has shocked the experts and is proud to continue to do so.--eak
                        Elizabeth A. Kephart, PHR
                        mom/caregiver to Ryan-age 21
                        Incomplete C-2 with TBI since 3/09


                        • #13
                          Hi Jett,
                          Thanks for your reply. I am encouraged that you saw improvements for a long time. Hopefully, I will also.
                          C1/C2 walking quad, SCI from 4/2010


                          • #14
                            Hi luckydog,
                            Thanks for your reply. You have made great returns. That's encouraging. From your posts, I see that you still have significant problems, and that fatigue is one of them. How did fatigue change over time?
                            C1/C2 walking quad, SCI from 4/2010