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

  1. #1
    Senior Member mj23's Avatar
    Join Date
    Sep 2005
    Chicago, IL

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

    I think it would be a good idea

  2. #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.


  3. #3

    Thumbs up

    Quote 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.

    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

  4. #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.

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

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

  6. #6
    Senior Member Broknwing's Avatar
    Join Date
    Mar 2004
    Central Florida
    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??
    L-1 inc 11/24/03

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

  7. #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.

  8. #8
    Senior Member
    Join Date
    Nov 2004
    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.

  9. #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.

  10. #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; 02-02-2006 at 03:43 AM.

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