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    Suggestion: Why not make a forum for those who walked after having a SCI

    I think it would be a good idea
    C-5, 6 SCI. Took about 6 months to walk. Walking full time. Without any assistance since Nov. 2003 and will make a full recovery

    #2
    Seriously doubt that there is enough interest or demand for a whole forum for this. I would suggest instead starting a thread on this in the Exercise or Life forums.

    (KLD)
    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.

    Comment


      #3
      Originally posted by SCI-Nurse
      Seriously doubt that there is enough interest or demand for a whole forum for this. I would suggest instead starting a thread on this in the Exercise or Life forums.

      (KLD)
      I bet the demand is higher than you might think. I know when I first got injured I spent hours and hours online searching for stories of people who walked again after SCI. I think it's a great idea, personally.

      PS I can walk with forearm crutches does that count

      Comment


        #4
        I like the idea of an exercise forum . My daughter received little opportunity to exercise since the first hospital didn't have much for equipment. Now she is at kennedy krieger and this has given her a chance to blossom.

        Comment


          #5
          mom, there's an exercise forum already on the carecure site.

          http://carecure.org/forum/forumdisplay.php?f=74

          That's awesome that your daughter has an opportunity to go to KK. Please let us know how she progresses!
          Daniel

          Comment


            #6
            MJ-
            I like the idea!!! There are a number of us out here that are walking or at least learning to...

            KLD I think there's more of a demand than you anticipate...I rarely visit the exercise forum and think that I'd miss out on a solitary thread....Not to mention that there are a TON of issues that relate directly to walking and and gait training....

            Dr Young-what do you think??
            'Chelle
            L-1 inc 11/24/03

            "My Give-a-Damn's Busted"......

            Comment


              #7
              I would like it. Being new I wondered if I would fit in here because I "can" walk -- though it isn't pretty & causes extreme pain after a minute or two, I lose my balance, and my legs give out randomly, causing falls or near-falls.

              I must use a scooter if I go out in most cases, e.g., shopping. My walker is handy but I have to sit down so often that I just stay home a lot. Right now I'm relying on going to stores with customer scooters such as Target, WalMart, or the larger grocery stores. I'm waiting on insurance approval for a new scooter & lift -- the old one was too big and then my old van with the lift died anyway.

              Also, I've already seen the question asked and answered here:
              Q: What is AB? (someone not knowing it stood for able bodied)
              A: Walking!

              No amount of exercise will change my condition. I'm over 7 years post-SCI, and even when I was younger and freshly-rehabbed, my leg strength was rated as 45% of normal. Sometimes I have to use my hands to lift a leg into position (grasping both sides of the leg above my knee), such as when getting in and out of a scooter or my car.

              Docs have told me the lesion is likely changing as I'm getting older (similar to post-polio syndrome) because the spinal cord's high water content -- similar to vertebral discs & connective tissue -- lessens with age. This in turn gradually pulls, puckers, or twists the lesion -- causing worsening of symptoms and other changes such as additional weakness.

              The attitude that since I walk I'm able bodied is what I face on "the outside" including friends, family and acquaintances and it would be nice to see how other "incompletes" deal with it.

              PS -- The pic I just added is about 14-15 years old, pre SCI. So though I appear youngish (I was 31 or 32) I do now have some middle-age issues. I'll add a newer photo as soon as I can find my digital camera (just moved & don't know where anything is) or can get to my old house & get newer jpgs off the old computer. Even then I'll have to crop the creep (my soon-to-be ex) as I don't have any recent pictures of just me.

              Comment


                #8
                I've been using both a chair and walker since my injury 26 months ago. I have a fitness routine designed by my PT. It has kept my legs strong, but my walking is ugly. He would like to see me use a cane more. I'm terrified. My right leg likes to spasm like a ballerina on point, tossing me to the floor.

                With the new year I'm eligible for a new round of PT. Since I'm already strong, the new PT is concentrating on my coordination and gait. I'm amazing myself! My right leg no longer drags along the floor. I can actually see myself using a cane, if I can just overcome the terror of the spasm.

                awakenow -- I'm proof that exercise certainly can change your condition. Of course our bodies change as we age, spines especially. That's why I work so hard at keeping my muscles strong. It scares the bejeebers out of me to see how quickly 60 is approaching! Like you, I'm guilty of lifting my leg. It's easier than getting the leg to do it. Then I smack myself and mentally yell, GO AWAY BAD HABIT !!

                For the first time in more that 2 years, I really do believe I will walk without that damned walker surrounding me.

                Comment


                  #9
                  I also doubt if there would be enough participation for a whole forum. If you post a reply on the links below, they will be bumped to the top. The first link is an especially good discussion that could be revived.



                  Issues with being a walking sci



                  if you ambulate, how far can you walk?




                  My home suspended treadmill getup




                  Looking for other "Walking Quads"



                  Personal Gait Training System


                  Gone from crutches to nada?


                  I'm getting old too. My right hip caves in on me these days.
                  Blog:
                  Does This Wheelchair Make My Ass Look Fat?

                  Comment


                    #10
                    SoFla, it's not a matter of being "guilty" of using my hand to move my leg, it's that my leg won't move -- it no longer has the strength to lift up and out. My condition is worse than it was, with the same exercises. My SCI was Sept. '98.

                    My legs give out, as I said, which I was told is similar to an electrical short -- the spinal cord being the conductor and mine is faulty, to be simplistic. Sometimes I feel a "jolt" right before, sometimes not. And at times it gives out at the hip, sometimes thigh, ankle, it's totally unpredictable. Falling in itself can cause more problems and in my case it likely already has (that is another story). Hitting your head when you've got tethering, spurring, herniation, and a plate & screws in your neck can cause serious problems. A scooter was just recommended to me by my doc and PT. In fact the doc recommended a chair, but I don't want to sell my vehicle and I don't like not having handlebars & a basket in front of me. Maybe I just look like a dork with a scooter -- I don't care though. I think the doc & PT know where to draw the line between determination/perseverance & stupidity/risk (this is NOT an insult -- I'm the tethered/spurred/herniated/plated/screwed one).

                    There is not only a lesion as I mentioned, but also scar tissue anchoring it to the canal wall, along with additional spurring (spondylosomething on the latest MRI) and a new herniation flattening the cord at C4/5. So my condition is changing for those reasons as well. I don't know what the future holds, though none of us does obviously. I also have osteonecrosis in my right hip (& now possibly left), caused by the amount of steroids they pumped into me after I woke up paralyzed. So a hip replacement is possibly in my future as well.

                    Being on my feet more than a minute or two HURTS, whether I stand or walk, as it has even when I was "at my best" after nine months of rehab (six weeks in the hospital after waking up paralyzed and the rest outpatient). My return was very gradual, one day I could wiggle a couple toes, the next I could move my ankle, then a leg, etc. My body had to learn to be upright again (sit), then stand, and finally to walk again.

                    I couldn't do rehab in the pool due to a possible bowel accident (now that would be icky) but other than that I had full rehab and was given exercises to do at home. I do them. I'm just getting worse, that's all. I notice it when using the foot controls while driving now too. I can't raise my arms to the side much at all, have trouble pulling up my pants & other ADLs such as reaching out to turn out a bedside lamp -- these have all just come on in the past 6 mos. or so, so am guessing it's C4-5 related, which is a new development since a previous MRI two years ago. I'll find out more next week after a neuro visit.

                    I'll look at the other threads but still think a forum would be nice. There are issues we face that are different. You should have heard some of my (soon to be ex) mother-in-law's advice. Examples:

                    "Aunt Mildred uses the shopping cart to lean on when she is out and has pain. She finds it gives her great relief." (She has arthritis & weighs 200 lbs.)

                    "Accupuncture has had excellent results, you should try it!" (As if I hadn't looked into any & all options already...)

                    "They say exercise can really help with pain." (Duh -- if she'd asked first, she would have discovered I do certain exercises. But it's not any exercise for any pain as was her uninformed point of view.)

                    As everyone here knows there are different types of pain, my main type being nerve -- & of course there are subtypes of nerves and nerve pain, e.g., root, long nerves, microscopic endings, etc. -- and a lot of exercise just triggers more pain. I clench my neck & shoulder muscles if something is difficult, so the reward for my leg exercises is a tension headache and more shoulder/neck spasms. I do get Botox in my neck & shoulders but it only helps to a point. And muscle relaxers make me sleep my life away. It's this Catch-22 stuff that is currently bringing me down.

                    My pain doc says hang in there, something will come along soon, but on my last visit I was too apathetic to even discuss it, figuring he was just trying to lift my spirits. My main thought was, just give me my narcotics script & I'll be on my way.

                    Since four of us have requested this in the past two days (not counting the two who will go to the exercise forum), is it a possibility to create a forum on a trial basis and then if there's no interest just delete it later?

                    I did check out this forum a year or two ago and saw a lot of fighting between quads & paras so figured members would make mincemeat of me! (Though I have SCI am I not genuine enough?? ...was my thinking at the time.)

                    Also should mention that my "recitation" of diagnoses, symptoms, etc., here is mainly because I didn't see any forum for introducing yourself, and there isn't enough room in the bio section. I'm very aware that I don't have the extent of physical problems most do here, and I'm grateful for that, but I don't want to be viewed as that much different either.
                    Last edited by awakenow; 2 Feb 2006, 3:43 AM.

                    Comment


                      #11
                      Hello Awakenow-
                      As far as a new scooter, so that you don't have to go thru getting a whole new vehicle and getting a lift for it....Have you looked at the little Pride GoGo Ultra scooter? I have one that I use on occasions, I used to use it a lot more but I actually prefer to use my chair most of the time to my scooter....However, the GoGo breaks down into 4 pieces fairly simply and could fit into whatever car you already own. This might help you in getting what you need sooner and with less unnecesary expenses....

                      Also, if you are able and want to continue walking, have you looked at the Hugo walkers? It's a 4 wheel walker w/hand brakes and a seat. Another member(MrCoffee) and I have just recently discussed it at length b/c he was looking for something he could use and place his textbooks on/in. He has since posted a video of him walking with it. if you do a search for "Hugo Walker" you'll find lots of recent hits, I'm sure.

                      I hope that I've been able to help somehow. Feel free to ask me any questions here, via PM, or e-mail. I"ll answer as best I can. I'm still only a lil over 2 yrs post and am working on getting to functional walking....Hopefully one day I'll be there....
                      'Chelle
                      L-1 inc 11/24/03

                      "My Give-a-Damn's Busted"......

                      Comment


                        #12
                        Originally posted by awakenow
                        SoFla, it's not a matter of being "guilty" of using my hand to move my leg, it's that my leg WON'T move -- it no longer has the strength to lift up and out. My condition is worse than it was, with the same exercises. My SCI was Sept. '98.

                        My legs give out, as I said, which I was told is similar to an electrical short -- the spinal cord being the conductor and mine is faulty, to be simplistic. Sometimes I feel a "jolt" right before, sometimes not. And at times it gives out at the hip, sometimes thigh, ankle, it's totally unpredictable.

                        There is not only a lesion as I mentioned, but also scar tissue anchoring it to the canal wall, along with additional spurring (spondylosomething on the latest MRI) and a new herniation flattening the cord at C4/5. So my condition is changing for those reasons as well. I don't know what the future holds, though none of us does obviously.

                        I also have osteonecrosis in my right hip (& now possibly left), caused by the amount of steroids they pumped into me after I woke up paralyzed. So a hip replacement is possibly in my future as well.

                        Being on my feet more than a minute or two hurts, whether I stand or walk, as it has since I was "at my best" after nine months of rehab (six weeks in the hospital after waking up paralyzed and the rest outpatient). My return was very gradual, one day I could wiggle a couple toes, the next I could move my ankle, then a leg, etc. My body had to learn to be upright again (sit), then stand, and finally to walk again.

                        I couldn't do rehab in the pool due to a possible bowel accident (now that would be icky) but other than that I had full rehab and was given exercises to do at home. I do them. I'm just getting worse, that's all. I notice it when using the foot controls while driving now too. I can't raise my arms to the side much at all, have trouble pulling up my pants & other ADLs such as reaching out to turn out a bedside lamp -- these have all just came on in the past 6 mos. or so, so am guessing it's C4-5 related, which is a new development since a previous MRI two years ago. I'll find out more next week after a neuro visit.

                        I'll look at the other threads but still think a forum would be nice. There are issues we face that are different. You should have heard some of my (soon to be ex) mother-in-law's advice. Examples:

                        "Aunt Mildred uses the shopping cart to lean on when she is out and has pain. She finds it gives her great relief." (She has arthritis.)

                        "Accupuncture has had excellent results, you should try it!"

                        "They say exercise can really help with pain." (Duh -- if she'd asked first, she would have discovered I do certain exercises.)

                        Plus as everyone here knows there are different types of pain, my main type being nerve -- & of course there are subtypes of nerves and nerve pain, e.g., root, long nerves, microscopic endings, etc. -- and a lot of exercise just triggers more pain. I clench my neck & shoulder muscles if something is difficult, so the reward for my leg exercises is a tension headache and more shoulder/neck spasms. I do get Botox in my neck & shoulders but it only helps to a point. And muscle relaxers make me sleep my life away. It's this Catch-22 stuff that is currently bringing me down.

                        My pain doc says hang in there, something will come along soon, but on my last visit I was too apathetic to even discuss it, figuring he was just trying to lift my spirits. My main thought was, just give me my narcotics script & I'll be on my way.

                        Since four of us have requested this in the past two days (not counting the two who will go to the exercise forum), is it a possibility to create a forum on a trial basis and then if there's no interest just delete it later?

                        I did check out this forum a year or two ago and saw a lot of fighting between quads & paras so figured members would make mincemeat of me! ...though I have SCI am I not "genuine" enough??

                        Also should mention that my "recitation" of diagnoses, symptoms, etc., here is mainly because I didn't see any forum for introducing yourself, and there isn't enough room in the bio section. I'm very aware that I don't have the extent of physical problems most do here, and I'm grateful for that, but it also makes me feel a bit like an outsider.
                        Awake,

                        Thank you very much for posting. I want to you to know that there are many "walking" people with SCI here on these forum. Your comments are making me think more about how are forum appear to people visiting for the first time here. As with any community and family, there will be some quarrels and we try hard to keep them off the front pages. Regarding the formation of a forum, I suggest that if there is substantial interest in such a forum as shown in continued postings on topics such as this, we can create a forum.

                        Regarding your description,
                        Sudden weakness while walking. This is a result of sensory input that causes a flexor withdrawal reflex. The withdrawal reflex is a powerful protective reflex that is initiated by pain in any joint or surface of the leg and particularly the bottom of the foot. For example, if we step on a nail, the reflex activates the hip flexors, hamstring, and anterior tibialis muscles. At the same time, the withdrawal reflex inhibits the tonic extensor reflex which supports our weight, i.e. the quadriceps and gastrocnemius, in that leg while stimulating a body weight shift (trunk muscles) and the cross extensor reflex which causes the opposite leg to extend to take up the weight. This can also happen if you get a flexor spasm. Please note that even minor stimuli can cause a withdrawal reflex. For example, if you lightly tickle the bottom of the feet, this can cause the withdrawal reflex. So, comfortable shoes and thick socks can help. It may also result from the hip pain.
                        Cord compression. As people age with spinal cord injury, the spinal cord can be compressed for many reasons. For example, spondylosis and spondylolisthesis, herniated discs, spinal canal stenosis), scoliosis) and kyphosis, syringomyelia may compress the spinal cord, and tethering of the spinal cord and roots all may contribute to degeneration of the spinal cord.
                        Hip degeneration. Osteonecrosis (bone degeneration) of the hip and shoulder joints can occur with prolonged use of glucocorticosteroids (longer than 48 hours). The causes are not well understood but this is a well-documented phenomenon. That is why prolonged steroid use is discouraged. When this affects the head of the femoral bone, it is called aseptic femoral necrosis (degeneration of the head of the femur without infection). The treatment is replacement of the femoral head with a prosthesis. This problem is aggravated by the tendency for people to develop osteoporosis (loss of bone and calcium from bone) when they do not put weight on their bones. Therefore, weight-bearing exercises and drugs that help increase bone calcium are helpful.
                        Neuropathic pain. This is pain that results from abnormal neural activity in the central nervous system. When there is loss of sensory connections, from a peripheral nerve injury or spinal cord injury, there is often abnormal sprouting of existing neural connections, some of which may cause increased activity of spinal neurons that signal pain to the brain. This can take the form of increased sensitivity to minor sensations (allodynia) or spontaneous pain (spasms). Treatments such as low dose amitryiptyline (elavil), high-dose gabapentin (neurontin), and other anti-epileptics may reduce such pain. Likewise, treatments that reduce spasticity (baclofen) and spasms (gabapentin) can help.
                        Bowel accidents during swimming. Because the bowels quite literally have a mind of their own (there are neurons in the bowel, called mesenteric neurons and Auerbach's plexus) that control bowel activity, a variety of stimuli can cause unexpected release of bowel contents. The way to handle this before swimming is to empty your rectum and lower bowel before you go into a pool. Swimming in the morning after emptying the bowel is probably the best. You may also want to consider a small deep pool that is constructed for the purposes of walking in water, with a treadmill at the bottom.

                        I hope this is helpful.

                        Wise.

                        Comment


                          #13
                          Originally posted by Broknwing
                          Hello Awakenow-
                          As far as a new scooter, so that you don't have to go thru getting a whole new vehicle and getting a lift for it....Have you looked at the little Pride GoGo Ultra scooter? I have one that I use on occasions, I used to use it a lot more but I actually prefer to use my chair most of the time to my scooter....However, the GoGo breaks down into 4 pieces fairly simply and could fit into whatever car you already own. This might help you in getting what you need sooner and with less unnecesary expenses....

                          Also, if you are able and want to continue walking, have you looked at the Hugo walkers? It's a 4 wheel walker w/hand brakes and a seat. Another member(MrCoffee) and I have just recently discussed it at length b/c he was looking for something he could use and place his textbooks on/in. He has since posted a video of him walking with it. if you do a search for "Hugo Walker" you'll find lots of recent hits, I'm sure.

                          I hope that I've been able to help somehow. Feel free to ask me any questions here, via PM, or e-mail. I"ll answer as best I can. I'm still only a lil over 2 yrs post and am working on getting to functional walking....Hopefully one day I'll be there....
                          Hi 'Chelle,
                          I'd love to have the GoGo but my doc is afraid I'll "hurt myself" loading or unloading it. I mentioned that I thought there was some lifting device (like a small hydraulic handtruck), but then there's the logistics of loading the lifting device itself. Possibly it could be slid up into the back of my vehicle, a Honda CRV. The wheelchair guy said he'd never heard of any lifting device like that. I later found it online, it's the Genie LoadLifter. It had been recommended to me previously by a voc rehab guy from the State of Oregon. Or maybe just get a wired-in lift assist thing.

                          But no, they want to put an exterior lift on the back of my CRV to hold the scooter, nevermind that I'd probably then have no use of the cargo area! (They said the door would probably have to be welded shut, or the bar that holds the scooter would have to be welded on.

                          The walker I have does have a seat & handbrakes. It is a lifesaver! I was just meaning that I have to sit so often, because if I go anywhere I tend to stay awhile, that a scooter is more practical. I have sat on the walker and then used my legs to move around a little but it doesn't work for very long distances and it definitely looks weird...

                          I definitely walk in the house, I can hold onto things when & if needed. But usually at home I'm sitting or laying. I've fallen too, but usually I can grab something on the way down! Recently fell (half) out of bed -- I managed to grab the headboard (Victorian iron type) and was wedged between that & the end table & wall. Legs still halfway on the bed, my head knocking stuff off the end table, with my butt about a foot above the (hardwood) floor. Hard to explain. So there I clung. I had to laugh, and move veeerrrryyyy slowly to get myself out of that predicament. Sorry if that sounded like a sex position!! No one around but my dog though, dammit.

                          It will be nice to get out more when the weather gets better (this Portland rain sucks), maybe meet some people... Thanks for your comments & kindness. Good luck to you -- hope you can walk without pain -- everyone's different!

                          PS -- I agree -- there's gotta be a way to get a GoGo in and out of the CRV that doesn't involve a team of "experts" to figure out!
                          thx
                          Lisa
                          Last edited by awakenow; 3 Feb 2006, 12:25 PM.

                          Comment


                            #14
                            why dont we start a poll to see if how much interest there is in a sci walking forum?

                            Comment


                              #15
                              My 2 cents worth. One of the best things about carecure is that the moderators are experts and able to answer questions and post topics on new advancements in their area of expertise. I don't know if it would be possible (or within carecure rules) to get someone from Project Walk or SCI-Step or another of the organizations that concentrate on helping SCI's to walk to moderate a walking forum. It would be great to have access to expert advice in this area on carecure. I know that when Mr Coffee posted his video a few months ago there were several suggestions on how he could improve his walking. Dan-NC recently posted a video walking with quad canes - I haven't seen any suggestions but I bet an expert could offer some advice. As technology improves and more of us llearn to use it - the ability of people to offer advice should also increase.

                              I'm not sure of the areas of expertise of the moderators of the exercise and recovery forum but think that a walking forum with dedicated expert moderators would be a big help to the many SCI's attempting to walk or improve their mobility.

                              Mike
                              T12 Incomplete - Walking with Crutches, Injured in Oct 2003

                              Comment

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