View Poll Results: How many people were "incomplete" shortly after injury are now walking?

Voters
266. You may not vote on this poll
  • I am incomplete and walking (>1 year after injury)

    81 30.45%
  • I am incomplete and walking (≤1 year after injury)

    78 29.32%
  • I am incomplete but not walking (>1 year after injury)

    55 20.68%
  • I am incomplete but not walking (≤1 year after injury)

    46 17.29%
  • I had a "complete" spinal cord injury and recovered walking.

    6 2.26%
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Thread: How many people are "walking quads"?

  1. #121
    I'm t12-l1 post almost two year, I can walk and run, I stumble when I run quite a bit though, but walking is fine. I was in my chair less than 2 months post injury. My rehab team is wonderful, brought me to my feet very soon after I cam home from the hospital. I still have limited sensation in both legs and cant not feel the ground All in my right leg.

  2. #122
    Quote Originally Posted by Lustre View Post
    I'm t12-l1 post almost two year, I can walk and run, I stumble when I run quite a bit though, but walking is fine. I was in my chair less than 2 months post injury. My rehab team is wonderful, brought me to my feet very soon after I cam home from the hospital. I still have limited sensation in both legs and cant not feel the ground All in my right leg.
    Quote Originally Posted by Loblolly View Post
    I sustained a crush injury in 1992. I had a complete dislocation of my spine between L1-L2 with an L2 burst, and my L3 and 4 were damaged as well. The damage to my spinal cord was significant. and was classified as a complete--but that was changed several weeks in to my recovery-- I was in a drug induced coma for several weeks on a vent. My recovery was 18 months long- first in a wheel chair, then a walker with braces and then canes with braces, a cane to nothing.

    So, I am an incompletely para- who walks. I have some paralysis in my right leg and cannot feel the ground with my left foot..I stumble and fall sometimes. I believe I was incredibly Blessed by God with the Doctors that cared for me.

    My daughter helped me "learn" to "run" again- and she and I ran a half marathon in November 2011- to celebrate the coming of my 20 year (5/92) SCI anniversary. I finished.
    And of course you have a paraplegic (not a tetraplegic or quadriplegic) injury...so you can't be a "walking quad".

    (KLD)

  3. #123
    Hi,

    I had a motorcycle accident compression fracture at t8 had it fused within a few hours (received "meth" as well) around 15 1/2 months ago. The spinal cord was bent and bruised. Initially ASIA A. doctors never told me I wouldn't walk again but I could see in their eyes things didn't look good. I was told that with these kind of injuries it is wise to wait 12 weeks before giving a more reliable prognosis. Reading this thread I can understand why. Pretty much everyone that had a good recovery had some good signs of movement in their legs within that period. I had only sensation coming back but that also stopped at around 4-5 post-injury. Had good B&B&sex recovery within that period and the improvements there keep on coming (still incontinent thou) , I think with time it has a good chance to come back close to normal.

    voluntary movement in my legs has seen little improvement. With time, spasms and spastic have increased and every time I try to move my legs voluntarily they make their own things (bending the knees mostly). After 5 months of rehab at home everyday with a PT and swimming, I saw little improvement so I went abroad in a clinic to do triple 6 rahab (6 months, 6 days a week for 6 hours). I did mostly weight-supported "walking" in parallel bars with braces on the legs. After 4 months I was able to ambulate without weight-support and a little on a walker. My spastic legs progressively allowed to remove the knee braces and use only AFOs.

    For the last 5 months I've been home, had parallel bars made and I do a few hours a day on it everyday (I do nothing but that as a matter of fact). Improvement keeps coming mainly in that my Central Pattern generator is trained to do steps-like movements (I bend my knee when I do steps for the last 3-4 months) and balance is slightly better. However, I have no voluntary muscle control below my abs and this honestly is very discouraging. I have tried swedish crutches but it still feels like i'll never be able to walk on those. Also, I cant stand up unless I have the parallel bars hold on to. Usually when I stand up, my legs start making dance-like moves for a few seconds before they calm down (that is why I cant rely on a walker as that would mean an immediate fall).

    My leg muscles are much stronger since I am able to stand up (in fact looking at my legs you almost cant see any atrophy anywhere) but I think that spastic and spasms are more responsible for it than my voluntary muscle work. I was advised to take baclofen or sirdalut but upon reviewing medical literature I have noticed that it might reduce spastic but it also reduced your muscle strength so I opted out.

    Having said all that, I am very happy to be able to stand on my own and do some steps in parallel bars (also a little on walkers) with AFO but for me this is still not walking and I have little hope to be able to come back to a normal life again (being a community ambulator) and my life and dreams really feel shattered, I wake up every morning and feel like there is no sense for me to go out of bed (which takes me around 15 minuted with one person helping me by they way). I know I might sound spoiled and negative, but i'm sure many on this forum relate to what I'm saying.

    I notice that most people that get good recovery are cervical injuries, followed by lower-back injuries. Mid-thoracic injuries (t1-t9) very rarely get substantial improvement if it is not seen within the first few weeks post-injury.

    People around me tell me that I am pessimist and shouldn't lose hope (they say that while they plan their next vacation to Tuscany for instance - meaning that its easy for them to say when they have no idea what they're talking about or what it feels to be in this condition) but I am highly educated and knowledgeable in this matter and I would consider myself more of realist than a pessimist.

    So, to everyone in this thread: Yes, people often recover more than what doctors tell them they will. Yes, you should make thousands of hours of exercise post-injury to maximize recovery (even if I can't walk, the fact my legs actively bear my weight and make step-like movement has brought immense benefits to my health). No, as of August 2012 there isn't a single proven therapy (not even talking about a cure here) that helps recovery except exercise - I really mean nothing, people keep on telling me "you have to try everything" What is everything? Stem-cells? Surgery ? Pills? Waste of time, money and empty hope, I rather concentrate on exercise.

    To all those that had a nice recovery, never forget that it is luck in the first place (and of course a lot efforts and rehab) that you injury wasn't worse than what it was that has allowed you to recover so be thankful to god for that , or whatever else you believe in. To all those (like me) that did (and still do) their best to recover but are not getting the results that allow them to gain functional walking, keep trying (at least it will keep you healthier) but be realistic about possible outcomes and don't blame yourself because things ain't working out, it's not your fault that some recover and you not, simply your injury is worse than them. People go in space, make supercomputers and transplant hearts, but the spinal cord is a mystery still. About 15 years ago there was big hopes that some regenerative therapy will come soon (within five years as they were all saying) but now that we make more research on the spinal cord we realize we actually know much less on it than we though and it is incredibly complex. Funding is low, a lot of pharm companies prefer things they are now because a SCI patient makes a lot more money for them without a cure then with a cure and research for a cure is very expensive, hasn't produced any significant result since the rise of medicine (centuries ago). They way things are going , a median forecast for real helpful therapy is 20-25 years (it might be sooner, might be later, might even be never although i doubt it). They very little efforts made towards finding a cure combined with the difficulty of the task just doesn't allow me to realistically hope for a cure sooner. People like Jerry Silver and dr. Wise are awesome and have my admiration because they try hard and aren't in it for the money (not only at least) but let's face it there's only a handful of teams like this in the world so we can't expect miracles here. I spoke to a person from Acorda and I have to say I was disgusted by how little they seem to care (about pushing forward ch'ase for instance) and they absolutely see no sense of urgency in moving forward. The only things important for them is to make sure that they don't lose any money on trials if they're not guaranteed to make money, and they don't want to sell the patents to someone else who is more motivated than them because they wouldn't forgive themselves if they weren't the ones who make all the money when and if a decent therapy is found.

    I know it's a little off topic but I think it's all interconnected in a way.

    I have a question for dr. Wise in the end:

    I see some people saying that even with good recovery they lose a lot of it after years or decades which is for me very surprising and frustrating. I havent seen any papers published on that. Do you have any idea why that is happening? Thank you

  4. #124
    It is something nobody is talking about. It is a little secret the health personel keep for themself but it happens. I did walk for 34 years without any aid and slowly I lost the strength I had. I am have now been a wheelchair user for 8 years. It seems to me like it happens to everybody, I know at least 5 persons here and I don't know anybody who is still walking after 40 years post. It seems to me it starts when people are around 50 years old, the body is getting older, the normal aging is catching us easier than the AB because we have already lost so much.

    Wise can explain it. I have written emails to him about it because nobody here wanted or could give me the answer and I got the answer.
    TH 12, 43 years post

  5. #125
    Senior Member
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    I think there are a couple of pamphlets from Craigs about aging with an incomplete SCI. They predict deterioration earlier than the AB person. I am sure it varies per person like everything else with SCI but, at 60, I can say that I am busy taking care of my bucket list things that I would rather not do in a chair if I have a choice.
    2012 SCINetUSA Clinical Trial Support Squad Member
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  6. #126
    Quote Originally Posted by tweez View Post
    Hi,
    Very nicely put and I totally second you practically on everything you posted above. I am coming from a severe motorcycle accident as well 2 years ago and although I'm a bit lower that you are (T11, have the abs), I have an even 'worse' injury ASIA A complete + conus injury with flaccidity (and among other fractures I sustained in my accident and must be careful of)

    What I truly also share is that we need to keep on exercising, not actually in order to walk but to keep the existing health not to deteriorate..

    I love swimming as I was a water polo player, I would like to take it more seriously (also because bed exercises and walking on parallel bars are annoying :-( but its tough to find constantly the time and effort sometimes, especially if you are also working full time, living on your own, and fighting the everyday routine from the wheelchair position!

    However, we need to be realistic and I would add a conservative optimism that things will change to beter in terms of cure/therapies and quality of life boost for SCI patients. At least we are still here and life is still beautiful if you consider that its the 'trip that matters'...
    Last edited by ReArkou; 08-09-2012 at 06:23 PM.
    ''Nulla Tenaci Invia Est Via''

  7. #127
    Junior Member
    Join Date
    Sep 2012
    Location
    Kansas, 1 hour sw of KC
    Posts
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    My stuff

    Hi, 55, male, 21 years incomplete, C5-6, 4 months hosp.,1 year outpatient therapy.
    I worked so very hard to leave the hospital without a wheelchair. That was foolish male pride, I should have taken the chair for back up.
    I have been part of an ongoing study "Spinal Cord and Aging" this whole time.
    The results have been published if you would like to see them. It is way too accurate.
    http://www.craighospital.org/Left-Na...n%20the%20Road ... you may need to cut and paste.
    I just had my last re-eval 2 weeks ago and I don't think I communicated very well what I meant by "feeling weaker".

    I see a real need for a place for incomplete quads, some kind of online support community. Most medical professionals know little to nothing about incomplete's. We are such a small percent of the overall SCI community we get overlooked and sometimes ignored by those we trust our medical care to. Try explaining Autonomic Reflexia to anyone and it's usually a glazed look from them even when you think you have explained it.
    I know there are plenty of you here who know exactly what I'm going through because I'm sure many of our "treatment" stories are similar.
    I look forward to finding some way to find or have a place for incomplete quads to have some kind of internet community.It would be helpful and hopeful to feel like somebody gets it/us/me.
    Keep up the good fight and we shall see results (I think I just typed that to me).
    Thanks for your time.

    CanSasman

  8. #128
    Quote Originally Posted by CanSasman View Post
    Hi, 55, male, 21 years incomplete, C5-6, 4 months hosp.,1 year outpatient therapy.
    I worked so very hard to leave the hospital without a wheelchair. That was foolish male pride, I should have taken the chair for back up.
    I have been part of an ongoing study "Spinal Cord and Aging" this whole time.
    The results have been published if you would like to see them. It is way too accurate.
    http://www.craighospital.org/Left-Na...n%20the%20Road ... you may need to cut and paste.
    I just had my last re-eval 2 weeks ago and I don't think I communicated very well what I meant by "feeling weaker".

    I see a real need for a place for incomplete quads, some kind of online support community. Most medical professionals know little to nothing about incomplete's. We are such a small percent of the overall SCI community we get overlooked and sometimes ignored by those we trust our medical care to. Try explaining Autonomic Reflexia to anyone and it's usually a glazed look from them even when you think you have explained it.
    I know there are plenty of you here who know exactly what I'm going through because I'm sure many of our "treatment" stories are similar.
    I look forward to finding some way to find or have a place for incomplete quads to have some kind of internet community.It would be helpful and hopeful to feel like somebody gets it/us/me.
    Keep up the good fight and we shall see results (I think I just typed that to me).
    Thanks for your time.

    CanSasman

    You are correct. I joined a sci/d group locally and was not well received by most of those in the group as I was the only one who walked in with a cane. Last years appointment with a therapist at the V.A. in Memphis was disgusting. As a result I will see a different one this year or none at all.

  9. #129
    I am a C4/5 walking quad 2 years post. Spend 3.5 months inpatient then 18 months outpatient. Took 5 months to leave the chair and through a lot of work use forearm crutches.

    I agree, in therapy or at the adaptive gym I go to there are only 3-4 walking quads, the vast majority are bound to a chair. Although we all have so much in common it would be nice to chat with more walking quads.

  10. #130
    Recent C-7 (Oct. 13 2012)
    2 months ER/ICU then 20 days rehab. But 50 lbs. lighter mostly muscle tone, just didn't get much out of it. Now 4 1/2 months arms are getting stronger (still crappy forearm but tricept working luckily) forcing stomach or trunk to wake up currently...
    Now feeling comes and goes stomach and legs. B&B getting better.
    My question is it seems my muscles are awake and functioning to the point of cramping at times. My legs have a lot of movement, they bend and now have lifted a couple of times. I can also make them twitch while I am sitting in my chair. As I flex the muscles in my legs I can feel it but not see it only the twiching. Is it just in my head?

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