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    Whats it like to regain movement or sensation?

    I hear about people regaining movement. things like wiggling toes and such and that turns into them walking but I always wondered what is the process like. do spasms interfere with the movement? how do they know the movement isnt a spasm? i have so many involantary movements how do you know if something is completely volantary or not?

    #2
    Eric, I have movement to a point in legs; defintly with tightness. Recovery to walking? Not a cnace at this tine. I use a walker and left brace; someone helps me up and my arms hold me up. I shuffle thru my own stregth and no or little help from legs. I throw out my legs but my foot and lower legs aren't doing much. I need help form a treatment and I hope it comes our way.

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      #3
      I was asking the question for those who have experienced returns. I was wondering what the process was like. like do spasms interfere with movement or do they cease once you get voluntary movement?

      Comment


        #4
        I am ambulatory. the process for me was relatively quick but painful, could move my toes post surgery (lost voluntary motion bilaterally below my waist). Was using a walker almost immediately with wheels as needed. by 3 months I was walking but needed help for any distance. was back on wheels after both fusions for a short time.

        Now my mobility is deteriorating and it looks like wheels again soon.

        Unfortunatley the episodes of spasticity and spasms have never stopped and interfere with my mobility and remain extremely painful.

        Don't know if this is what you were looking for.
        Kindly,

        The Ketamine Kitty

        All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

        Next time I die make sure I'm gone,
        don't leave 'em nothing to work on JT

        And I ain't nothin but a dream JM

        Comment


          #5
          Originally posted by bollefen View Post
          I am ambulatory. the process for me was relatively quick but painful, could move my toes post surgery (lost voluntary motion bilaterally below my waist). Was using a walker almost immediately with wheels as needed. by 3 months I was walking but needed help for any distance. was back on wheels after both fusions for a short time.

          Now my mobility is deteriorating and it looks like wheels again soon.

          Unfortunatley the episodes of spasticity and spasms have never stopped and interfere with my mobility and remain extremely painful.

          Don't know if this is what you were looking for.
          Kind of i guess.

          I'm just basically wondering what its like to go from paralysis to recovery. I guess not many people have experienced that.

          Comment


            #6
            Originally posted by Eric.S View Post
            Kind of i guess.

            I'm just basically wondering what its like to go from paralysis to recovery. I guess not many people have experienced that.
            This question is probably best for the Exercise & Recovery forum but.....

            I guess it is different for everyone. I know from my own frustrations that when I got any returns ie hip flexors and quads, they were tiny little flickers that you could barely see with the naked eye. And over the months by tensing, stretching and working hard generally I have been able to go from a flicker, to a visible movement, to a quite considerable muscle contraction. Now my hip flexors are strong enough to move my legs from side to side but they still have some way to go. And my quad on my right leg is now strong enough to move my knee cap up and down. However, the left quad is still less than a flicker.

            With regards to spasticity - well, I know that I have so much tone in my ankles and toes that it makes it very difficult to tense and move them. I know I can move them voluntarily but the tone makes it very difficult.

            In summary, patience is a virtue and plenty of hard work is required. I think it was Patrick Rummerfield who said that you actually have to have the mindset of an Olympic Athlete to make inroads into our injury - and he is not wrong.

            Comment


              #7
              Originally posted by Eric.S View Post
              I hear about people regaining movement. things like wiggling toes and such and that turns into them walking but I always wondered what is the process like. do spasms interfere with the movement? how do they know the movement isnt a spasm? i have so many involantary movements how do you know if something is completely volantary or not?

              I think I fit the bill pretty much.

              On the last day of being an inpatient at Shepherd they did the full Asia test on me. In fact Kelly was instructing 4 other trainee PT's. We left the movement test until the very end since I had demonstrated no ability to move below my injury. I'll never forget the moment all those PT's yelled..."wait...do it again...I could have sworn that moved" looking at my toe. I did it again and they went nuts "it did move...!!! look Mark....do it again...".

              That chagned my categorization from Asia B to Asia C and qualified me to go on the Locomat machine.

              Its a strange process. I didn't want to move my toe for the rest of the day for some reason, I didnt want to find that it wouldnt move again.

              A week or so later my PT supported my knee so my lower leg was hanging. She told me to try to straighen it; and it kicked out a few inches. I remember that feeling....it was so... I have a film of that very moment here.
              http://s128.photobucket.com/albums/p...t=1c06c082.flv

              I"m not sure why the quality is so bad, but you get the idea.

              Anyway, that was July 12th after my accident on April29th. So 10 weeks in.

              I remember getting frustrated at times. I thought that my high level (T3) would mean that my upper trunk would not have the stabiilty to hold itself - that was not worth worrying about it turned out.

              My quads came back well, my hamstrings less so.

              I now walk 500 yards each day on a walker, and stand at home, especially in the kitchen. I use my chair for most things practical. Being able to walk and take some verticle steps makes this whole "disabled" thing alot more bearable. Even if the chair is my main form of transport.


              As for your question. Spasticity is good. At first you will find that you can trigger it. It will help you walk if you get to that stage. I can always walk faster when I first start out since the spasticity helps.



              You will learn to distinguish between;
              • pure spasticity
              • voluntary movement assisted with spasticity
              • voluntary movement
              Good luck....and please remember, you will get back only what you are given by your body. Some people think you have to work to earn it back, but that is just not the case. For example, the return in my left leg is FAR better than the right. Did I work the left more??? No, I worked my left and right legs exactly the same. You get whatever your favorite God decides to give you. So just take whatever you are given and do the most with it you possibly can.

              Comment


                #8
                What did/does that transition feel like internally? When I try to move it's like a buzzing/humming and dull ache. Mentally I think I can connect with most major and some minor muscle groups, but there's just no visible movement. It's almost an achy painful feeling when I try to move.

                Pelican, how did it feel inside when you were slowly transitioning from no visible movement, to visual flickers?

                Comment


                  #9
                  Keeping a journal of sorts help because the changes are so small that they are hard to recognize. They happen over a course of time but as Markb701 states you will only get back what your body lets you get back. It is a waiting game but exercise and nutrition IMO certainly has its place in recovery. Keep up the good fight and always work on getting better. Waiting around seems to dull the senses.

                  Comment


                    #10
                    Originally posted by MarkB701 View Post
                    I think I fit the bill pretty much.

                    On the last day of being an inpatient at Shepherd they did the full Asia test on me. In fact Kelly was instructing 4 other trainee PT's. We left the movement test until the very end since I had demonstrated no ability to move below my injury. I'll never forget the moment all those PT's yelled..."wait...do it again...I could have sworn that moved" looking at my toe. I did it again and they went nuts "it did move...!!! look Mark....do it again...".

                    That chagned my categorization from Asia B to Asia C and qualified me to go on the Locomat machine.

                    Its a strange process. I didn't want to move my toe for the rest of the day for some reason, I didnt want to find that it wouldnt move again.

                    A week or so later my PT supported my knee so my lower leg was hanging. She told me to try to straighen it; and it kicked out a few inches. I remember that feeling....it was so... I have a film of that very moment here.
                    http://s128.photobucket.com/albums/p...t=1c06c082.flv

                    I"m not sure why the quality is so bad, but you get the idea.

                    Anyway, that was July 12th after my accident on April29th. So 10 weeks in.

                    I remember getting frustrated at times. I thought that my high level (T3) would mean that my upper trunk would not have the stabiilty to hold itself - that was not worth worrying about it turned out.

                    My quads came back well, my hamstrings less so.

                    I now walk 500 yards each day on a walker, and stand at home, especially in the kitchen. I use my chair for most things practical. Being able to walk and take some verticle steps makes this whole "disabled" thing alot more bearable. Even if the chair is my main form of transport.


                    As for your question. Spasticity is good. At first you will find that you can trigger it. It will help you walk if you get to that stage. I can always walk faster when I first start out since the spasticity helps.



                    You will learn to distinguish between;
                    • pure spasticity
                    • voluntary movement assisted with spasticity
                    • voluntary movement
                    Good luck....and please remember, you will get back only what you are given by your body. Some people think you have to work to earn it back, but that is just not the case. For example, the return in my left leg is FAR better than the right. Did I work the left more??? No, I worked my left and right legs exactly the same. You get whatever your favorite God decides to give you. So just take whatever you are given and do the most with it you possibly can.
                    Wow, some of this sounds similar to what I discovered 2 days ago.

                    recently i've been able to move my right toe. And im pretty frightened because im afraid that its just spasms. it seems like what your saying where I can trigger my spasm and it moves my toe. i dont know what to make of it. next month im entering agressive rehab so hopefully I'll get a better grasp of whats going on. i continue to try to move the toe although I haven't told anyone...

                    Comment


                      #11
                      Originally posted by Eric.S View Post
                      Wow, some of this sounds similar to what I discovered 2 days ago.

                      recently i've been able to move my right toe. And im pretty frightened because im afraid that its just spasms. it seems like what your saying where I can trigger my spasm and it moves my toe. i dont know what to make of it. next month im entering agressive rehab so hopefully I'll get a better grasp of whats going on. i continue to try to move the toe although I haven't told anyone...
                      Reading this brought back all those feelings of anxiety. You want to be excited because you think you made something happen....but you don't know for sure, and you could be setting yourself up for (more) disappointment.

                      One thing I will repeat is; this is kinda out of your hands. If that toe has a connection to your brain it will start to move, wether you keep trying or not. Try not to jinx it by celebrating too soon...best just leave that sleepy toe in his shoe for another day or so......(at least that's what I remember thinking, lol). good luck man..!

                      Comment


                        #12
                        you answered your own question

                        Originally posted by Eric.S View Post
                        Kind of i guess.

                        I'm just basically wondering what its like to go from paralysis to recovery. I guess not many people have experienced that.
                        you're right, this level of recovery is resrved for the movies, ie; kill bill2

                        Comment


                          #13
                          Originally posted by Tman9513 View Post
                          What did/does that transition feel like internally? When I try to move it's like a buzzing/humming and dull ache. Mentally I think I can connect with most major and some minor muscle groups, but there's just no visible movement. It's almost an achy painful feeling when I try to move.

                          Pelican, how did it feel inside when you were slowly transitioning from no visible movement, to visual flickers?
                          For me I sense heat in the area I am trying to tense/contract. It's hard to explain but heat or tingling of some kind is probably the best description. I started out spending a lot of time visualising (lying on the bed with eyes closed) tensing various parts of my legs. Say 50 contractions on each muscle. Start with the toes, big toe, ankles, calves, quads, hip flexors and glutes. I dont know whether Im contracting all of them but it feels like I am and I supplement it with deep breathing exercises. Who knows if it is doing anything but I feel more aware of my legs.

                          Keep trying to amplify those sensations AND dont forget to keep a journal. Log the smallest details and read back regularly!

                          Comment


                            #14
                            Originally posted by Fly_Pelican_Fly View Post
                            For me I sense heat in the area I am trying to tense/contract. It's hard to explain but heat or tingling of some kind is probably the best description. I started out spending a lot of time visualising (lying on the bed with eyes closed) tensing various parts of my legs. Say 50 contractions on each muscle. Start with the toes, big toe, ankles, calves, quads, hip flexors and glutes. I dont know whether Im contracting all of them but it feels like I am and I supplement it with deep breathing exercises. Who knows if it is doing anything but I feel more aware of my legs.

                            Keep trying to amplify those sensations AND dont forget to keep a journal. Log the smallest details and read back regularly!
                            has that brought you any recovery?

                            Comment


                              #15
                              I get a similar tingling sensation, almost like pin pricks but not really a heat feel. Are you taking any Baclofen, Valium, or anything like that? If so, have you noticed any difference in how much motor control or sensation because of it? I take a small amount of Valium to help with the spasms at night so I can sleep, and it seems when I try to move it's more achy on the Valium.

                              Comment

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