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

[Wise Young]

At the Rally for the Cure last week, the wife of a good friend with spinal cord injury came and asked if I would speak to her children who have been seeing all these things on television suggesting that a cure for spinal cord injury is coming and that they are expecting their father to walk. She asked if I would speak to the children and explain to them what this means.

I was wondering what people are telling their children concerning the cure and what their responses have been. Will they understand or become disappointed if it doesn't happen right away? How have you handled this situation?

Thanks.

Wise.

[SCI-Nurse]

I don't have children, but we do have a SCI Awareness program for elementary aged children where I work.

We always tell them that scientists are working very hard on a cure for spinal cord injury, and we hope that it will occur soon. We also tell them that more money is needed for this and that it will not happen right away. They always ask about what they can do, and we have a handout that they can give to their parents on fund raising needs. Since we work with the PVA chapter closely, and they do fund raising for cure research that is happening at our affiliated university, this is what we promote the most. Some of the kids send in their nickels and dimes too!

(KLD)

[Sue Maus]

Our daughters were 10 and 12 during the summer of 2000 when I was injured. I think it actually helps that they were in the vehicle with us when our Ford Explorer rolled over. They understand what happened so that's one issue we don't struggle with. It quickly became an issue of, "this happened, now what".

Our approach has been to keep the girls informed of the emerging promising treatments while emphasizing the need to focus on what we have now and live life to the fullest given what we have to work with. Tomorrow is never guaranteed. They know that return of some function is something I dream of always, and, it's getting very close. In the meantime, we won't put our lives on hold waiting for that time in the not too distant future.

Thanks,
Sue

[bigbob]

It's interesting to see how every conversation on the cure reverts to FUNDING. Funding, funding and more funding. What I would point out is that the person with the SCI is still a whole person. I would point out that life does not end with a SCI but it is difficult. Pushing children to raise nickels and dimes could make them feel responsible and guilty. Being there is no current cure I would stress that things are being done now to add to a fuller life for someone with an SCI currently, but in addition also work is being done to find a cure in the near future. Children are impulsive, they want quick solutions, I think they would feel more assured about current ways of coping.

[betheny]

I think kids can probably grasp having to wait, because they always have to. We always tell them...you can stay up, drive, hang out with friends...when you're older. Do you remember thinking that when you were grown
up, everything would be gravy?

I think it is good for them to know that people are working on a cure. Also, that there are risks involved and people brave enough to chance it. And people dedicated to spending their lives working on it. Hard work, dedication, courage, a goal...these are good things for kids to see.

C5/6 incomplete, injured Aug. 2000

[Leo]

Wise, I doubt that your friends husband has been injured as long as I, but from the little I know I expect to be walking by the age of 60. I'm 48 now. Hell I expect to be dancing at that age and my dance card is filling up fast. I have that much faith in you and all the others working to make this happen. My children are in their 20's and they know it's going to happen, and not just cause dad says so.

I spoke to 200 kids yesterday, 40 at a pop, each group for 40 minutes. (about drunk driving) This is a group I spoke to one year ago and they were the first people in public that I shared my plans with to go to China and why. The next two weeks unkown to me these kids brought coins and dollars to donate for my surgery, they were the first to do so. Yesterday I got the opportunity to thank them and show them what their donation and act of kindness accomplished. They asked me if I would walk again and I said I expect to. Of course I told them it would take years and a lot of hard work and other surgeries.

An expectation is not a promise. An expectaion un-met more often leads to a demand, and like mentioned in another thread we've expected and demaded to little in the past.

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

[john smith]

Wise;

This is an excellent topic and an issue that may be answered better if the question is reversed. That is, what is it that children can say to us adults to help us cope? Children are a great source of inspiration to me. Their innate optimism and willingness to accept the possibility of miracles puts most of us adults to shame. We are hardened by the capriciousness of life whereas the innocence of children allows them to readily say and think, "Why not?" We doubt, they believe; we question the impossible and children accept it with enthusiasm. I believe that the most successful of scientists are continually resourcing the child within themselves. Their passion for discovery is childlike in its innocence. All the mature naysayers disputing the cure for SCI are just constipated with their own self importance.

Accordingly, in speaking to her children, this woman should be straight forward. Tell them that solutions to the problems of spinal cord injury are difficult but doable. If you believe you can, eventually you will. Children need to hear this from their parents and teachers and all other mentors, their whole life long about everything they do. We cannot guarantee your dreams will come true. But we can guarantee they will not if you don't try.

I am much more confident talking with nieces and nephews about my son's prospects for recovery. Thus far, they seem more accepting, albeit slow, of the progress than adults. They do not easily lose hope.

John

[PN]

I think that children can handle the truth. I believe that the future looks much better to repair the damaged spinal cord now than when I was injured back in l987. I think that the future looks more like a Jules Verne wonderland that a Franz Kafka nightmare. However, one more serious hit on the United States by terrorists can potentially throw everything off track. I would not mention this if I were talking with children.

PN

[kate]

What have we told them? The truth--which is that we don't know. We talk about our own sadness, impatience, and hope. We talk about our despair, and when things are funny we talk about that.

We let them in (in a limited way) on whatever seems to be happening with us, and that varies.

How do they react? LOL, sometimes they're bored. But whenever they're asked to write a personal essay, they both write about their dad. They talk about how determined he is, and how patient, and how much they admire him, and how much they want him to all the way well.

In our case, things were very wildly horrible for about six months, and then for the next 2 and half years have become much, much better than predicted. Maybe that's made it easier to keep talking . . . but I don't think so. It's our normal pattern to process everything out loud if we possibly can.

[marco25]

When I told my children about attending the Rally for a Cure in NYC, they were so excited. I realized then that neither Scott nor I had ever talked to them in a serious way about the possibility of a cure. We'd always focused on his courage and optimism about each new day--and there's nothing wrong with that. But this seemed to awaken hope and excitement in them, which fueled mine even more.

So I told them that some very smart scientists all over the world were very close to finding a cure, but that it still might be a long time before Daddy could walk, because his injury is so old (almost 28 years post). However the work being done now would help those people who had recently been hurt. There was still work to be done, and that would take money. They seemed to understand that.

Scott's sci has been an excellent means of teaching the children about the function of the spinal cord and how it affects the body. I can only imagine what a cure for sci would teach my children--and the world--about the power of hope and a determination to conquer a seemingly invincible enemy.

[SCI-Nurse]

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)

[duramater]

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

[bigbob]

KLD If that is the case please accept my apology.

[Wise Young]

Thank you for all the thoughtful comments. Wise.

[Tinbasher]

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

[Wise Young]

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.

[Jeff B]

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.

[john smith]

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

[SCI-Nurse]

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

(KLD)

[Lindox]

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.

[Leo]

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. http://sci.rutgers.edu/forum/images/smilies/smile.gif

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

[Wise Young]

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 http://sci.rutgers.edu/forum/images/smilies/wink.gif. It's that professorial gene. I will try again. Wise.

[marco25]

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. http://sci.rutgers.edu/forum/images/smilies/smile.gif