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

  1. #11
    b, you are twisting my words. The kids spend 1/2 day at our center. We show them about wheelchair sports, have them talk to people with SCI who work, go to school, lead active lives. We only talk about the cure issue for about 10 min, and we certainly never "push" kids to donate. The handout is give only to those who ask for it.

    (KLD)

  2. #12
    Dr. Wise,

    Talk to them just how you talk to us about hope. Tell them about living life, using examples if you have to of the others who are doing it..I love when you say.."my friend Kent Waldrep" or "my friend Peter Morton". Explain to them that a cure in the future is something to believe in, and take ownership of, by being supportive and patient the way things are for them today. I can see you...like I have with my own children..sitting at their level and talking to them eye to eye...you will put your hands on their shoulders and talk to them, and be honest about what you are hoping for. Tell them only truth, not lies or fiction, and let them tell you what you think and know. It only has to be simple..that you and a bunch of other scientists are dedicated to finding what no one has been able to find before. Tell them it is complicated, and that they will hear things in the news but to enjoy and live life to the fullest while they watch for things to come. No matter what you say...you probably know already that kids love you...you make what I believe is ...a lasting impression.

    Good luck...Mary

  3. #13
    KLD If that is the case please accept my apology.

  4. #14
    Thank you for all the thoughtful comments. Wise.

  5. #15
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    I talk to young people as part of their Personal and Social Awareness classes they are around 15 /16.

    I tell them that a cure is closer than ever and that although many people with old injuries may not ever be "cured" a day will come where new injuries have a greater hope of healing. They often tell my that they know all about Christopher Reeves "recovery" and this depresses me because they have latched on to the "positive" hype.

    We often debate about whether a 40 / 50 year old with a long standing injury would choose to put their life / career on hold to go through a long period of treatment / rehab which had a limited or unclear chance of success.

    I tell them that a cure is only part of the solution and while they wait for the smart guys and gals in the lab to find a cure, their own actions in treating disabled people equally, advocating for good access, accessible and affordable personal assistance, being inclusive, parking responsibly and understanding that life can be good even when paralysed actually helps lessen the disability we experience.

    I stress above all that waiting for the cure is like waiting for a bus except you don't know when a bus is coming, or if when it comes it will be the right bus for you. Five years ago we didn't even know if we were on a bus route or if a thing called a bus was even possible but now we know that somewhere scientists have made pieces of buses and soon someone will put them together in the right order. In the meantime we need to continue our journey by whatever means we can, doing interesting things and meeting wonderful people along the way in the hope that one day a bus will catch up with us.

    Tinbasher
    The Lake District UK

  6. #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.

  7. #17
    Senior Member Jeff B's Avatar
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    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.

  8. #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

  9. #19
    Too complex for most 8 yos. OK for 10-12 yo, Wise.

    (KLD)

  10. #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.

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