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Need advice concerning what to say regarding cure to children of a friend with spinal cord injury

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    #16
    So, here is what I am thinking of saying to children (age 8-12) of parents with spinal cord injury, wanting to know if and when their parents will be cured. Please criticize and comment.


    Your spinal cord connects your brain to your body. The spinal cord carries messages between the brain and the body. These messages travel along long and thin nerve fibers called axons. Every time you tell you leg to move, your brain sends a signal down an axon to the part of the spinal cord that controls your leg. Likewise, your brain receives feelings from the leg through the spinal cord.

    Until several years ago, most people thought that there will never be a cure for spinal cord injury. Doctors thought that people with spinal cord injury will never walk again. Today, several treatments will help animals walk again after spinal cord injury. We do not know yet whether the treatments are safe and will work on people. Many scientists are working on improving these treatments so that they will work in people. It is very important to show that the treatments are safe and effective before they are applied to people.

    Injury to the spinal cord damages axons that connect the body and the brain. After spinal cord injury, the brain just cannot send or receive messages through the injured part of the spinal cord. However, the spinal cord above and below the injury site remain alive. That is why many people with spinal cord injury show movements of their legs even though they cannot control them.

    To cure spinal cord injury, we must regrow axons. Regrowing axons is called regeneration. For example, if somebody has a spinal cord injury in the neck, the injured spinal axons must regenerate from the neck to the lower spinal cord. Regeneration is very slow. An nerve fiber or axon grows about as fast as your hair. So, regenerating the spinal cord may take as long as growing your hair from the neck to the lower back. It may take months or years.

    For a long time, doctors thought that spinal axons cannot regrow. However, we now know that axons can grow but they don't like to grow in the spinal cord because something in the spinal cord stops the growth. Some medicines will make the axons grow in the spinal cord. Also, axons don't like to grow through the part of the spinal cord that is injured.

    Stem cells are special cells that can make many different kinds of cells. Unfortunately, it is hard to get stem cells. Embryos contain many stem cells, called embryonic stem cells. These cells can produce all the other cells of the body and can grow for very long times in culture without changing to other kinds of cells.

    Stem cells are also present in the bodies of adults. Called adult stem cells, they are hard to collect and to grow. They also do not make as many different kinds of cells as embryonic stem cells. When they are grown for a while in a dish, they change. Scientists are working hard to learn how to grow them in a dish.

    Scientists want to study both embryonic and adult stem cells, to understand how they make different kinds of cells, and to see if they can help repair the spinal cord. Because stem cells can make many kinds of cells, scientists are interested to see if putting these cells into the spinal cord will allow axons to grow across the injury site.

    Other cells besides stem cells can also help axons grow in the spinal cord. For example, cells in our nose and the part of the brain that receive smells signals will help spinal axons grow. Likewise, cells in our peripheral nerves will also help spinal axons grow. When these cells are put into the spinal cord, they can help rats recovery walking after spinal cord injury.

    Doctors are now beginning to try these treatments in some people with spinal cord injury. Some doctors think that they are helping people recover a little. However, none of the treatments are yet making people walk and run around. However, doctors are trying different combinations of treatments and hope that the combinations will be more effective.

    It is hard to predict when these therapies will be shown to be effective. If we are lucky, work very hard, and have enough money to do the research, some treatments may become available in the coming years. The first therapies are already beginning to help some people recover some function. Later therapies will help more people recover more function.

    None of the treatments will make people jump up out of their wheelchairs and run around. Recovery may take months or even years. The treatments may require operations to put cells into the spinal cord and injections of medicine. Because people with spinal cord injury have been paralyzed for a long time, they will need to exercise to use their bodies again.

    What the words mean?

    Cure. To cause complete recovery.

    Spinal cord. The spinal cord is like a long rope that goes from your neck to the lower back. Your brain is connected to your body through the spinal cord.

    Axons. These are long and thin nerve fibers that carries signals between the brain and body.

    Injury. The spinal cord is protected by a column of bone, called the spine. Most spinal cord injuries result from spinal bone breaking and pressing into the spinal cord.

    Regeneration. Growing and reconnecting axons.

    Cells. Our bodies are made of many little living cells. These are so small that we cannot see single cell with just our eyes.

    Neuron. A nerve cell.

    Stem cell. Special cells that can make many different kinds of cells.

    Embryo. This is the earliest stage of an egg developing into a baby.

    Embryonic stem cells. Stem cells in the earliest stage of an embryo.

    Adult stem cells. These are stem cells that are found in the adult body.

    Treatments. Cells or medicines that are put into the spinal cord, injected, or taken by mouth.

    Operations. Surgery to put cells or medicines into the spinal cord.

    Comment


      #17
      I would add the following:

      Define "growing in culture" or change to "in a dish in a lab"

      For embryo "This is the earliest stage of an egg developing into a baby" Either say how small it is (grain of sand) or show a picture saying how many cells etc when stem cells are collected to clarify that it is not yet a fetus or baby. People or kids might tend to automatically envision a baby in a dish.

      "That is why many people with spinal cord injury show movements of their legs even though they cannot control them" follow with something like: because the lower spinal cord still sends messages to them, like reflexes.

      Define peripheral nerves

      "Because people with spinal cord injury have been paralyzed for a long time, they will need to exercise to use their bodies again." In a way it may be like learning to use them all over again like a baby.

      I'm not sure about using this last one.

      Comment


        #18
        Wise;

        I like very much your synopsis and it should serve you well in speaking to children of SCIs.

        Tinbasher;

        I also like your analogy about waiting for a bus.

        John
        "Hope is like a road in the country; there was never a road, but when many people walk on it, the road comes into existence." Lin Yutang

        Comment


          #19
          Too complex for most 8 yos. OK for 10-12 yo, Wise.

          (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


            #20
            I feel a model..one of those plastic types that show the body would be excellent to use with any age group.

            Images of the words if possible..and with the net..you can get just about every image known to man.

            Then a handout listing all the different sites and publications listed for educating
            the different age groups.

            It maybe the right time to publish a book called Why Johnny Can't Walk.

            Always a gimp..Never a wimp.
            Life isn't about getting thru the storm but learning to dance in the rain.

            Comment


              #21
              I don't know Wise, my three boys would be out the door after third paragraph. Or politly I hope said, never mind lets go fishing. [img]/forum/images/smilies/smile.gif[/img]

              A bit long and complicated. 2 cents

              "All you have to decide is what to do with the time that is given you."
              Gandolf the Gray
              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."

              Comment


                #22
                Leo, you know, that was what my kids use to do with me. They tell me that I explain more than they want to know. I don't think that my students dare tell that to me but I can tell when their eyes glaze over [img]/forum/images/smilies/wink.gif[/img]. It's that professorial gene. I will try again. Wise.

                Comment


                  #23
                  Wise, I can't emphasize how much it helped me understand the functioning of the spinal cord when you explained that humans are structured like dogs or other 4-legged creatures, with the anus being the "bottom" of the body. I was always confused why "walkers" still had B/B and sexual problems if they could walk. Well, duh ... makes perfect sense now.

                  Since both my children fall into that grade level, perhaps I tend to think at that level now. Proof that parenting does indeed cause brain damage.

                  Good luck. [img]/forum/images/smilies/smile.gif[/img]

                  Comment

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