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Thread: Need Info./Help

  1. #1

    Need Info./Help

    Hi,
    Im a t12-l1 para. Very incomplete wheelchair user. I have movement in my hips, quads and knees. However, I never really pursued walking beyond rehab as it was always too physically strenuous and exhausting as well as not being
    very practical. Ive been injured 22 years. In my 22 years of being injured, I have heard over and over "the cure is coming". In 1987 ,they said it would be 10 years. In 1997, they said it would be 10 years. I am now close to my third decade in a chair. Im frustrated. Im angry, although I know I shouldnt be. I would like some input from other users as well Dr. Wise and the nurses. Is there any hope for a cure or should I just call it a day and accept that this is it for me? Am I missing out on any new research that I could take advantage of right now? Im curious as I havent thought about cure for a while.

  2. #2
    Sounds like you may be incomplete enough to, with some strenuous attempts, make major improvement to your current situation. Also, make some strenuous attempts to find some information on the current state of research, possibly a few exhausting clicks on the first few links in this forum. In the meantime begin a workout regimen, maybe pretend you've just been inserted with ~the CuRe~, either way function will not come while you're lounging in your wheelchair.

    f
    ight

  3. #3
    I agree. You should be doing an exercise program to take advantage of how incomplete your injury is. Pool therapy is excellent for the amount off leg movement you have. You need it for cardiovascular conditioning, weight control, and reduction of diabetes risks (high with SCI) even if it does not increase the amount of return you get. Sitting around and doing nothing while waiting for the cure is not helping yourself.

    (KLD)

  4. #4
    I am a t12 incomplete. I have walked from the day I could, In therapy they tried to get me walking but I was not well enough to yet. It did take me between 3&4 months to get myself worked out of my chair, but I did it. My walking is NOT very pretty and I can't walk to far, But I CAN walk. Where most people here would give alot to be where WE are!!!!!!!
    You have to help yourself some or there might never be any kind of cure! From what I have observed, somone in our condition would be the last that any kind of cure would help anyway, so You need to get up and exercise, and get yourself going before it's too late. I hate to sound harsh But I could have just set around also, and many others like me, but we chose to do with what we have.

  5. #5
    I was in physical therapy for years. I was able to walk with braces and crutches, but was told that I plateau and sent home. The walking could never be "functional", it was simply for exercise purposes. I currently work 40 hours a week and have a family. Can you tell me where I am going to find the time to "walk" for exercise? My current regime consists of pushing my wheelchair 6-8 miles per week and lifting
    weights. I also use leg weights. My weight is not issue, nurse. I am 6ft tall
    and weigh 140lbs. My weight is exactly the same now as it was 22 years ago when I was injured. You know, none of you answered my question and your attitude is very judgemental. I probably wont come back. Thanks for nothing.

  6. #6
    Senior Member Leo's Avatar
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    Quote Originally Posted by para33
    Hi,
    Im a t12-l1 para. Very incomplete wheelchair user. I have movement in my hips, quads and knees. However, I never really pursued walking beyond rehab as it was always too physically strenuous and exhausting as well as not being
    very practical. Ive been injured 22 years. In my 22 years of being injured, I have heard over and over "the cure is coming". In 1987 ,they said it would be 10 years. In 1997, they said it would be 10 years. I am now close to my third decade in a chair. Im frustrated. Im angry, although I know I shouldnt be. I would like some input from other users as well Dr. Wise and the nurses. Is there any hope for a cure or should I just call it a day and accept that this is it for me? Am I missing out on any new research that I could take advantage of right now? Im curious as I havent thought about cure for a while.
    -------------------------------------
    Is there any hope for a cure or should I just call it a day and accept that this is it for me? Am I missing out on any new research that I could take advantage of right now?
    --------------------------------------------

    No not right now, but soon


    We need help to make it happen
    http://justadollarplease.org/

    2010 SCINet Clinical Trial Support Squad Member

    "You kids and your cures, why back when I was injured they gave us a wheelchair and that's the way it was and we liked it!" Grumpy Old Man

    .."i used to be able to goof around so much because i knew Superman had my back. now all i've got is his example -- and that's gonna have to be enough."

  7. #7
    Never give up on a cure, it is coming. It was wrong that you were given such estimates back in the 80's, near nothing was known about the cord environment, let alone repair strategies.

    You certainly don't sound like you're languishing so I think being advised above by an able bodied medical professional not to 'sit around doing nothing and wait for a cure' is patronising and irrelevant as clearly you have 'lived' since you have been injured, which is a very long time and a feat in itself. I would say to you however to put every ounce of yourself and every free minute you get into pushing yourself as much as you can physically in the meantime. You are 'blessed' to have the function you do have, please exploit it.

    If you don't have the time to scour the forum then please try to read the Stephen Davies and Keirstead trip threads. I think they'll give you the boost you need in realising your hopes for a cure are far from fruitless.

  8. #8
    para33,

    I am not sure from your description that you are "incomplete". You may have a low "complete" spinal cord injury. The definition of incomplete is to have peri-anal sensation and/or voluntary sphincter contraction. You may have an injury to the conus (the tip of the spinal cord) or a cauda equina injury. The spinal cord ends at the L1 vertebral body level in most people. The conus is located at L1. Below the conus is the cauda equina, which is mostly spinal roots.

    Unfortunately, many doctors are themselves not particularly certain and may not be diagnosing patients properly. The treatment for conus and cauda equina injury may be different. One important question is whether you have spasticity and/or atrophy of the muscles that are weak. The solution for conus/cauda equina injury may be different from thoracic and cervical spinal cord injury.

    Most physicians and scientists have been cautious in claiming cure. The concept that the cure will come by itself is also turning out to be wrong. It is not likely to come by itself without a lot of work, resources, and luck. There are not enough scientists workig on the problem and a lack of resources.

    Please do not believe everything that you read. One of the reason for this forum is so that people have enough information to be critical of what is being reported in the newspapers and television. Every few days, we have a breathless report from some reporter claiming that this or that therapy or development is a cure. Most of the time, they are wrong.

    On the other hand, there is real reason for hope and we have made significant progress in the last few years.

    Wise.

  9. #9
    Dr. Young-
    I was always told that its a t12-L1 incomplete spinal cord injury. As stated I have some movement and sensation in my legs and hips. I have no spasticity in my legs whatsoever. I do have atrophy, but not as bad as it could be because Im a thin person and Im able to exercise. I have no bladder control and no bowel control. I have no sensation in my groin, but by stimulating other parts of my body, I can ejaculate and feel a slight orgasm, not as strong as before injury. My sphincter muscles are sort of in between, They have a so-so level of tightness. Im a bit confused, but it sounds like your right, maybe its a conus injury? What would be the best treatment modality for my type of injury. Is there anything I can do at this time? OR should I just do what the others have said, continue to exercise and wait for something in the years to come?

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