Virtual Townhall Meeting: Reducing the Risk of Secondary Conditions for People with Spinal Cord Injury. Presenters: Thilo Kroll and Suzanne Groah. >> LAUREL: Good afternoon. This is Laurel Richards with ILRU in Houston. Welcoming you to a webcast today on spinal cord injury and the prevention of accelerated aging. It in fact will focus on the new Research and Training Center on spinal cord injury and secondary conditions which is the -- being run by the National Rehab Hospital researchers and physicians in Washington D. C. And before getting started, I want to relay a story about Lex Frieden and I -- gosh, it was about maybe 15 or 20 years ago -- we were in Maine doing training for Stephen Trembly with his center in Portland, Maine, and we were very, very young, and we were doing training to consumers and what independent living is, et cetera, to consumers and staff and board members. Lex, as many of you know has a spinal cord injury. Had broken his neck in a car accident as a freshman in college. So we were in Maine and after one kind of long day with the board members, we were having dinner with the whole group, seafood as you might imagine, and I noticed Lex was watching this one man there. His name was red. He was an older man. I would say in his mid to late 60's. I would have said grandfatherly, and Lex was -- it wasn't casual watching, it was pretty much scrutinizing. I thought that was curious because it was out of character. I leaned over to him and said why are you watching that fellow? The other fellow was one of the board members. Lex said he's the oldest one I have ever seen. And I thought -- later it dawned on me later not that he was the oldest quad Lex has ever seen -- Lex had never seen a quad that old, and that speaks to the subject today of the fact that so many folks with spinal cord injury are living longer. The good news the medicine has gotten so much better and folks are living so much longer. The bad news is don't get old so fast. There are complications that come with aging that come with everybody aging and then there are special complications that come if you have had a spinal cord injury. And today Thilo Kroll and Suzanne Groah are going to speak about secondary conditions which affect people with spinal cord injury and how to prevent them and approaches that they will be taking in this innovative new Research and Training Center sponsored by NIDRR. So Thilo, I can do four or five more stories, but I think I'll turn it over to you and Suzanne to please present to us on this important subject. >> THILO: Thanks a lot, Laurel. It is a pleasure to talk to everyone and that we have this opportunity to speak to everyone today about our plan training activities under this new rehabilitation and training center on secondary conditions and the rehabilitation of individuals with spinal cord injury and like you said, Laurel, I mean there is -- research has come a long way, but still we haven't gotten all the answers and we still struggle a lot with getting our training activities and our information out to the broader public to physicians, to clinicians, to practitioners and to policymakers. So what I would like to do is in a series of webcasts and people who listen in for the first time, ILRU has done these webcasts for quite some time now and has excellent experience with this technology. What we would like to do is actually use this webcast technology to speak with you, consumers with spinal cord injury and practitioners using this methodology or this technology over the next five years every quarter, to address some of these issues that are relevant with regard to secondary conditions and exercise and the prevention of spinal cord injury related complications. We call these meetings virtual town hall meetings and we would like to really introduce them as another form of getting together and really getting your input in our research and training activities. So we really are interested in hearing from you and would like the input to shape our RRTC so that it really truly becomes a public undertaking, a public RRTC. But without further ado, I would like to introduce the principal investigator of this RRTC, Suzanne Groah, at the National Rehabilitation Hospital and she will walk you first through some of the research questions and activities that we seek to address in this new project and we will ask you to comment on this and send us some questions and remarks and comments later or throughout this presentation, and we'll address that later. Then afterwards I will talk a little bit about the training components of this RRTC. So Suzanne, without more hesitation, why don't you tell us a little more about the RRTC. >> SUZANNE: That sounds good, Thilo. Thanks for the nice introduction. I'm going to talk a little bit about secondary conditions and this accelerated aging that Laurel referred to as well. First let me give a little bit of background. Thilo did as well on the Rehabilitation Research and Training Center. Laurel said it's funded by National Institute on Disability and Rehabilitation Research, NIDRR, which is the Department of Education and it was formed in December of 2003. So we're really quite young. And we're now really beginning our work looking at secondary conditions after a spinal injury. We're very fortunate the leaders in the field of spinal cord injury research, consumer advocacy and independent living have really supported our efforts. As a result, the RRTC consists of healthcare professionals and researchers from the National Rehab Hospital in Washington D. C, the NRH Center for Health and Disability Research, the University of Miami School of Medicine, otherwise known as the Miami project to cure paralysis. The Independent Living Resource Utilization, as you know, and the National Spinal Cord Injury Association and SCI Network. So we've got a lot of great support from some good organizations and universities out there as well, which is really going to I think help and further this effort. Team members at the center include not only healthcare professionals and researchers but people with spinal cord injury are all involved in activities and projects which is great strength of the center. So now we have a little bit of background on the RRTC, let's focus on the topic which is secondary conditions after spinal cord injury. I'm going to give you a little bit of background to what we know has been happening to people with spinal cord injury over the last few decades and this plays in with Laurel's story early on. In the mid 1900's people didn't live very long after their injury. Most people died early because of inspection or bladder and kidney disease. Over the years, with improved medical care and changes in bladder management as well, people with spinal cord injuries are now starting to live longer and many more people are living to older ages as we heard Laurel describe as well. With the increase in lifespan, we're also seeing diseases that typically we didn't see before. These are chronic diseases such as heart disease and cancers. The difference though -- and there is a difference between some of the diseases we're seeing in people with spinal cord injury and people without spinal cord injury, in many cases we're seeing that these diseases are occurring at younger ages in people with spinal cord injury. And also the diseases might be diagnosed later in part because of the spinal cord injury or might even be more aggressive in people with spinal cord injury. So this is what I refer to -- when we're talking about this phenomenon of accelerated aging. It's either the occurrence of diseases or medical problems early or at a younger age than what we would otherwise expect. And this is important because you tend to have more medical conditions due to the spinal cord injury, which is what we call secondary conditions that are in some way related to the spinal cord injury any way. And now on top of that, you're having this accelerated aging phenomenon as well. So let's talk a little bit more about the specific secondary conditions we're seeing after spinal cord injury. You might be wondering what we're talking about when we refer to secondary conditions. You'll hear it a lot today and over the next five years in other virtual town hall meetings and other activities that we plan. The secondary conditions are really differences that occur to someone's body as a result of or related to the spinal cord injury or secondary to the spinal cord injury. And this means that these conditions occur at least in part because of the spinal cord injury or they have some relation to the spinal cord injury. These can range from small changes to major or even life threatening diseases. Some are very common, occurring in nearly every one with a spinal cord injury or rare affecting only a few people. A couple of examples of common secondary conditions I'm sure everyone is aware of would be bladder inspections and skin breakdown leading to pressure sores. Another secondary condition that occurs commonly in people with higher levels of spinal cord injury are breathing problems like bronchitis or pneumonia. Here at the RRTC we're learning more about these secondary conditions and we want to try to find out ways to prevent some of them. Another important component of this center is our belief that through exercise we can decrease the occurrence of certain secondary conditions. We know if people without spinal cord injury exercise a certain amount, they can decrease their chances of getting diseases such as diabetes, heart disease, strokes, and some cancers, among other things. While similar research hasn't even been done in people with spinal cord injury, we can pretty much assume that the same is true. We also know that people with spinal cord injuries actually exercise less than if they didn't have a spinal cord injury, and this might be because of accessibility, transportation, equipment, or other issues. And one of our projects at the center, in addition to increasing our knowledge about certain secondary conditions, we'll actually be developing a variety of exercise programs that are specifically designed for people with spinal cord injury and trying to take some of these barriers in mind. And our goal is that we're actually able to minimize or prevent certain secondary conditions by getting more people participating in exercise. As part of the project, people with spinal cord injury will actually help us identify some areas that might make exercise more appealing to others. Now that we have a basic understanding of the secondary conditions and exercise, let's talk a little more about other things we'll be trying to find out through RRTC. There has bench research recently looking at cardiovascular disease and people with spinal cord injury. And by cardiovascular disease, we mean heart disease, stroke, diabetes and we'll even factor in cholesterol levels into that. This is an area where there has really been a tremendous amount of research happening right now. Again, alluding back to Laurel's story because people with spinal injuries are surviving longer we're seeing more cardiovascular disease and stroke and diabetes. We know so far from the research that people with spinal cord injury have at least the same chance of getting heart disease as those with spinal cord injury. That's at least. There is also some research that suggests certain people with spinal cord injury may have an even higher risk of getting heart disease and stroke and that the heart disease may even occur at a younger age. So for example, someone with a spinal cord injury might develop heart disease in their 40's or 50's, whereas if that person didn't have a spinal injury, the heart disease may not have developed into that person was in his 50's or 60's. This is another example of accelerated aging of the secondary conditions heart disease. We've known for some time that people with spinal cord injury are more likely to have problems with high blood sugar levels leading to diabetes and high cholesterol levels contributing to heart disease and stroke. This might be due to the fact that people with spinal cord injuries tend to exercise less and tend to have less muscle and more fat in their bodies. Also some recent findings about close troll levels are very interesting and may be an area where we can really make a difference in improving the health of people with spinal cord injuries by decreasing heart December ease, and I'll just give you a little bit of background on the cholesterol. There are several different types of cholesterol. There San overall or total cholesterol, and H. D. L. and L. D. L. and I'm sure most people have heard of these. H. D. L. cholesterol is the good cholesterol and L. D. L. cholesterol is the bad cholesterol. And easy way to remember this is through the letters H. and L, for H. D. L. and L. D. L. H. D. L. is healthy and you want that level to be high, and L. D. L. is the lousy cholesterol and you want that number to be low. You like that? >> LAUREL: Scientific. >> SUZANNE: People with spinal cord injuries tend to have very low H. D. L. and high L. D. L. T. opposite of what you want to have. This is at least in part due to lack of exercise since we know that H. D. L. levels increase when you exercise regularly. So one way to increase your H. D. L. would be to exercise and ways to decrease our L. D. L. might be through eating a diet with less fat and losing weight. So in one of our projects we're actually going to be looking at this in much greater detail than it's even been looked at before in spinal cord injury. With our collaborators down at Miami, we're going to be checking people's cholesterol levels, including total cholesterol, H. D. L. and L. D. L. and then some other blood tests as well and then we're going to see what impact the level of the spinal cord injury, how complete the spinal cord injury is, age of the individual and length of injury, among other items have on the cholesterol levels. Then we'll use a guideline that's actually used nationally in able bodied individuals to determine the best way to change the cholesterol level for the better, whether it be through diet,er exercise and even cholesterol lowering medications. That's assuming we're going into this assuming that many people are going to have abnormal cholesterol levels and actually in some preliminary studies that's what we found. We've actually found that 70 percent of people approximately 35 years old with spinal cord injury have abnormal cholesterol levels needing treatment. And that's a very high number for a very young person. So it's our belief that with this many more people with spinal cord injury will actually need medications to lower their cholesterol levels, and that by doing this we'll actually be able to decrease heart disease and stroke in the long term. Another secondary condition that occurs at a much greater rate and is much more severe in people with spinal cord injuries is bone loss or osteoporosis. And the able bodied, osteoporosis occurs more in women than men and usually doesn't even start to occur until after menopause or when people are roughly in their 50's. In contrast, we know that as early as days after having a spinal cord injury people very, very rapidly start to lose their bone, and most people have a spinal cord injury get injured when they are young, usually when they are in their 20's or 30's. This is again another example of accelerated aging because what we're seeing is that now the person with the spinal cord injury is developing osteoporosis and it is definitely much more severe than what we see if the spinal cord injury wasn't present and starting at a much younger age. So you may wonder what actually happens to cause this bone loss after spinal cord injury. Most of the bone loss that occurs is because there is this great stress to the body immediately after the injury and you have changes in metabolism, but we also know the bone loss continues for at least months and on maybe even years after injury. So we think that another contributing factor to bone loss is again as we were talking about before a lack of exercise. We know the bone formation is stimulated by muscles pulling on bones and whenever someone stands, muscles are pulling on bones to keep the body upright. And then when one walks, runs, jumps or performs other activities even more muscle pulling occurs, again stimulating even more bone formation. As you know, depending on the severity of the spinal cord injury, someone might be totally paralyzed and unable to stand or walk oar may be able to stand upright or even walk to some degree. Most people though have at least some limitation in their ability to move about and nearly all people will have a moderate to severe degree of limitation in the muscle's ability to move and pull on bone. As a result, we see very, very severe osteoporosis in people with spinal cord injuries. Well, why do we care about the osteoporosis? Because another secondary condition that occurs after spinal cord injury is fractures or broken bones. Whereas people without spinal cord injury tend to break theorists, hips or even spine because of osteoporosis, people with spinal cord injury usually only have osteoporosis in the areas where there is paralysis. So you might instead break your leg, usually somewhere a above or below the knee. These broken bones are not simple breaks and tend to require more treatment or even surgery. Broken bones cannot only be a problem due to the fracture itself, but they also tend to lead to other things and they very significantly impact the quality of life for someone as they tend to take a long time to heal and they also require you to limit your activities sometimes during much of the healing process. So it's not unusual to hear of someone with a spinal cord injury breaking his or her leg, usually with a very simple or daily activity, I've heard of this with people lifting their leg up to tie their shoe. That's how fragile the bones are sometimes. But then during the healing process, because the healing requires either surgery or bed rest, that person will often come down with other problems such as pneumonia or a bladder or kidney infection and often we'll hear of people getting skin breakdown lead to go pressure sores as well. So we're conducting several studies looking at different types of exercise to try and prevent this osteoporosis, and the later broken bones that occur in one study we'll actually use functional electrical stimulation which is done by applying electrodes to a person's leg to stimulate muscle movement. And again the stimulation will stimulate the muscles to move and the muscles will then pull on the bone and what we're hoping is that will prevent some of the osteoporosis that we see after injury. In another study we're going to use a special device called a loco mat to help people who have some movement in their legs walk and we're hoping that through walking, standing and again with walking you'll have the muscle also pulling on the bones sufficiently to stimulate more bone formation, and that just by being upright and bearing some weight on the legs that the osteoporosis will again be prevented. So we feel that -- we're very excited by the research that we're just beginning to conduct through the center. And hopefully we'll be able to chat many more times in the future and talk about some of the results we're finding as well and to answer your questions as well. But now I'm going to let Dr. Kroll talk a little bit about a survey we'll be conducting and training we'll be performing through the center. >> THILO: Thanks, Suzanne. We are excited to combine different components of research with training. One thing that was mentioned is that we also will carry out a nationwide longitudinal survey that will have two waves basically people will be asked to complete questionnaires on exercise, secondary conditions, and ways of handling or managing their spinal cord injury two times with a year apart. And we seek to recruit 1,000 participants with spinal cord injury to determine their exercise and physical activity patterns over time. And further, we seek to establish critical predictors or ways to get a better understanding of the onset of secondary conditions over time. Through these predictors, we expect to include demographic predictors, they will include activity predictors and we will also look at in more depth in the form of qualitative interviews, barriers to exercise and regular physical activity to see how people really implement and use exercise recommendations -- activity recommendations in their daily lives and what is difficult for them to really adhere to recommendations to practice what has been recommended to them. I want to turn the page a little bit and talk a little more about the training activities we have proposed to carry out as part of the center and a number them are an extension of ongoing activities and an expansion of these to wider range of people at the same time with a greater focus on the prevention of secondary conditions. In our RRTC we seek to closely intertwine all our research and training activities. We work with peer mentors, people with spinal cord injury and so-called SCI life consultants who will serve as intermediaries between the clinicians in our study, the researchers and the consumers and the general public. So throughout the future town hall meetings you'll get to meet some of these individuals who work with us on this team and they will be available for comment, for questions and they will introduce some of the projects we just sketched out today for you and they will help us to facilitate some of your input. So the SCI life consultant I mentioned are represented throughout the study. They are people with SCI and they are also members of our scientific advisory panel. And as I said, they will be part of upcoming virtual town hall meetings. People with SCI and their advocates are the driving force on all of our training projects. The co-investigator or peer mentor program, Steve toll of the spinal cord injury network, and we'll talk a little bit more about this project in a little while. Steve has a spinal cord injury. The educators of our health professional center's curriculum which we'll develop and I'll speak a little bit more about that later, are people with SCI so they will be the educators of this program. The state of the science meeting will be organized by the National Spinal Cord Injury Association, in close collaboration with the researchers and clinicians on the study, and the principal person in charge for our virtual research network at ILRU also has an SCI. Let me talk a little bit more about the details and give you a little more overview of the training activities. We have two main or principal objectives. The first objective of our training activities is to prevent secondary conditions in people with newly acquired spinal cord injury as they get discharged from the rehabilitation hospital and transition into the community and into their regular life and days and routines. The second overall activity is to educate consumers as well as future healthcare professionals and healthcare professionals about secondary conditions and the benefits of exercise from a consumer perspective. Now, the prevention of secondary conditions -- the first training activity involves a peer mentor program that NRH will develop in close collaboration with the spinal cord injury network which is the local chapter in the Washington D. C, Maryland area, and NRH and SCI Network will monitor and prevent common secondary conditions among people with newly acquired spinal cord injury. These include skin breakdown. These include our Nary tract infections. These include pain and these include respiratory problems. For all of these we will develop some guidelines, some recommendations, a training program for the peer mentors to monitor, and to provide information. In total, we expect ten peer mentors to work weekly with up to 150 mentees over a period of five years, and to provide weekly support, biweekly in face to face meetings and in between over the phone. And the peer mentors will be closely supervised weekly by hospital staff and the a forementioned SCI life consultants. So again we have different levels of consumer involvement here to ensure that the information the peer mentors are providing is not only suitable, understandable, but also conveyed in a language and appropriate way so that they are acceptable to consumers with -- especially in the first phase the of the spinal cord injury. So what do our peer mentors do? They will provide information about secondary conditions and prevention, and with the input from our clinicians and consumers throughout the country through the virtual town hall meetings and other venues. They will also demonstrate prevention techniques, some of which they have learned in the rehab hospital, and some of which they have developed on their own. As we always observe how resource full our peer mentors are in developing strategies to better cope with different challenges in their lives and to make their lives easier and often with very simple means that don't require a lot of technology or very sophisticated and expensive means. So they will demonstrate prevention techniques and strategies they have successfully built into their daily routines and life. They will also be available to discuss and answer questions around prevention and exercise, again with the support and supervision of our clinicians and healthcare professionals as needed, and other people with spinal cord injury in terms of the super vice ores, the SCI life consults. They'll also support community integration, something that our already trained peer mentors have done successfully over the past three years and they will initiate referrals to clinical providers whenever needed and update their information and training on an ongoing basis so this will also be done by retraining activities with the research and training staff throughout the course of the project. The outcomes we will be tracking is a reduction in the occurrence of pressure ulcers, urinary infections, a general deconditioning, physical deconditioning. I'm hearing a little dog barking in the background. >> LAUREL: Sorry about that. >> THILO: No problem. We'll also be talking about -- looking at a reduction in hospitalization for avoidable complications and an increase in the self-management and control over SCI related complications. That takes us to the second cornerstone of our training activities, and that is to impact really the knowledge and skill set of future healthcare professionals. And repeatedly the claim has been made that there is a need to impact really the education process of health care providers to improve their understanding of health care understanding about disability-related issues. And specifically in this project on this ground, we seek to impact their knowledge about exercise and the prevention of the secondary conditions in individuals with spinal cord injury. In order to truly reflect the perspective and live the experience of people with SCI, we will implement a program that works with individuals with SCI as educators of medical and physical therapy students. So we try to impact really or influence the education process at a very early stage before actually the health care professionals go out into the world and work as clinicians in the field. At a later stage, we will also influence the continued education process in various ways with this program. We call this program the C. C. P. P. ordinary the consumer professional partnership program. And in this process, we will develop the program in four systematic steps. First, as a pilot education intervention, as part of the residency program for physician in physical medicine and rehabilitation here at the National Rehabilitation Hospital in Washington D. C. and we'll seek the feedback of these residents in shaping the program further and will then move on to the second stage and we have already agreements from several physical therapy schools and medical programs. At Georgetown University, Howard university, and marry mount university to implement the program there and insert it into existing curricula to reach about 1,000 healthcare professionals locally in the Washington D. C. region. And based on the results and findings and feedback we obtain in the second phase, we enter the third phase and we'll offer it as a continuing education component for healthcare professionals throughout the country and in this effort the fourth component, a freely accessible curriculum through the Internet will be helpful. This virtual resource network on exercise and prevention will be developed by ILRU in conjunction with all other collaborators on this project. So what do we mean by the consumer professional partnership program? We seek to -- like I said, we seek to integrate it into existing curricula and continuing education programs. The content will focus on what is really important with regard to prevention of secondary conditions and with regard to really developing the good knowledge and information about exercise formats that are acceptable and user friendly for consumers with spinal cord injury. What works really from the consumer perspective and what is important and so this is a consumer driven, consumer defined effort really to drive the education of healthcare professionals and examples of our curriculum content will include existing barriers for people with SCI to prevent these conditions. Personal experiences with medical complications, critical issues in patient provider communication, and consumer defined strategies to prevent secondary conditions and the benefits of exercise as consumers have discovered them. And we will ask you to really help us develop this program further and we will very likely in May schedule a second virtual town hall meeting and we will specifically talk a little more about this program and where we will ask or invite your feedback, your comments, your thoughts and where we would like to hear from you, what should healthcare professionals know about the prevention of secondary conditions based on your experience as an individual with spinal cord injury, so all knowledge and all experiences or as little -- if it cannot be disseminated effectively. That's another training is the development of an Internet-based environment, the so-called virtual resource network on exercise and prevention and our RRTC partner, ILRU, will be in charge of this project with input from all collaborators and you in the general public to really shape the content and the formats of this virtual resource network. In short, our virtual resource network on exercise and prevention will include a library, a video library, a town square for interactive meetings with members of the study and research team, with clinicians and consumers and advocates, and please check back. We need your input for this as well. This process is under development. I would like to hear from you what you would like to see as part of these resource pages. Also we invite you, if you have any resources that have been helpful in avoiding or reducing secondary conditions that have provided you with good information about secondary conditions and/or exercise, please forward this information to ILRU and last, but not least, today you are participating in our virtual -- first virtual town hall meeting as we started this meeting, and we will meet with you every quarter like we mentioned before to seek your input, advice, and shaping our research and training activities. So stay with us as a virtual town hall meeting member and RRTC member and we invite you to give us as much input and information so that really our activities will be a success for everyone involved. And we ask in conjunction with this webcast, we asked three questions and already asked you to provide us with some input and we already received some questions. And Laurie, should we address those questions at this point? >> LAURIE: Sure, Thilo. We're getting quite a few questions so I'll go ahead and ask the first one. This is Laurie. >> THILO: the first question we put out there is what are your personal experiences with secondary conditions related to spinal cord injury? >> LAURIE: and one of the questions -- actually a couple of them have to do with osteoporosis, and one person writes in, are there medications that are safe for women with SCI to take to help prevent osteoporosis? >> SUZANNE: There are some medications out there -- actually the research going on right now with medications -- actually let me take a step back. You want to think of osteoporosis in two ways. You want to think of either preventing it or reversing it. And if you remember when I was talking, once you have your spinal cord injury, you lose your bone really, really quickly after injury. I mean, you lose a significant amount of bone even in the first six months to one year after injury. So if you've been injured for longer than that, what you want to now start thinking about, as opposed to preventing osteoporosis, you want to think about reversing it. You lose so much bone in that first six months to a year that there is -- beyond that point there is much less bone to actually even lose, if that makes sense. So there is two issues: There is a lot of research going on right now with drugs to prevent bone loss, and of course we then want to use those right after injury. Drugs such as -- there is a class of drugs called bisphosphonates, also P. T. H. has shown some promise as well. I think the research in spinal cord injury in this area is just beginning, but I think it shows a lot of promise. The only thing to remember with medications, especially with these medications, they are not without side effects. Now, in terms of restoring bone once it's already been lost, that's a little more difficult issue, but I think the -- some of the research that's also going on regarding preventing osteoporosis and medications is also being conducted to restore bone as well. And so to get back to your questions, yes, there is a lot of research going on right now with medications. I think overall they are safe in women. You're going to have some side effects, but overall they're safe because you have to weigh the risks and the benefits. >> LAURIE: Okay, another question related to osteoporosis, does spinal cord injury and bone loss mass contribute to kidney stone formation? >> SUZANNE: That's actually a really good question. It very well could because what happens initially after the spinal cord injury when you have that really heightened period of bone loss is that the bone is -- the calcium in bone is actually being lost or the calcium is actually being drawn out of the bone. It goes into the bloodstream, which then has to be excreted from the body. So it goes through the kidneys and out the urine. And so one thing we've seen, we know that this really severe osteoporosis and bone loss occurs early, and over the last 25 years, we've seen with a lot of research that people get kidney stones especially tremendously in the first six months to a year, and treatments that people have come up with just haven't been able to change that at all. So that's actually a very, very good question. And no one has looked at it. My personal belief is yes that they are related and that's actually what we hope to do as a secondary study out of these or a followup study from some of the research is hopefully we will prevent some of the bone loss with the interventions we're suggesting and then we'll follow up and hopefully we'll see we're also preventing kidney stones. >> LAURIE: Great. Ready for another one? Are there standard best practice evaluations that should be done yearly in order to diagnose secondary complications early? >> SUZANNE: Well, my best recommendations would be the standard best practice for someone without a spinal cord injury, you use those, but I actually -- so for example you'd still want to get a colonoscopy, the regular preventive medical care you still want to get. My suggestion is get it earlier than what is otherwise suggested, if your physician would suggest you get a mammogram when you're 45 years old, just -- you know, we have no evidence whatsoever to suggest that breast cancer, for example, is increased in spinal cord injury, but again, we know about this accelerated aging, so it would be worthwhile to get those preventive tests several years earlier, five, ten years earlier and maybe even with greater frequency. We do know for example that bladder cancer is -- people with spinal cord injury are at a much higher risk of bladder cancer, mainly due to bladder catheters, so that would be a case where you would want to get some additional screening, starting if you have an indwelling catheter, for example, ten years after you've had the catheter or maybe once you're 40 years old and then you want to get screened roughly every year. The other significant area for screening, the other two areas we mentioned before which would be cardiovascular disease and osteoporosis. One of the big issues with cardiovascular disease is it is occurring somewhat earlier in people with spinal cord injury and it tends to go unnoticed maybe sometimes because of the level of the injury. The person really isn't able to perceive the pain that they otherwise would perceive, or maybe if the individual is not exercising as they otherwise would, then they're not able to perceive the shortness of breath that would otherwise be an indication of cardiovascular disease. So it's also my suggestion to get your lipids checked, get your cholesterol checked, get it checked early. It's very, very worthwhile at this point to get your -- at least blood tests of lipids and cholesterol checked when you're 35 years old if you have a spinal cord injury. There are some other -- a little more involved tests for looking for cardiovascular disease. There are other ways to do stress tests for example that are also worthwhile pursuing once you're 40 or 45 years old. And the other significant secondary condition we talked about is osteoporosis. You don't know you have it until you get a broken bone, unfortunately, but we can pretty much tell you from the research that's out there that if you have a spinal cord injury, 99 percent of the people have osteoporosis. Part of the problem is the test to look for it is pretty easy. It's a pretty simple X-ray test, but sometimes we don't know how to -- sometimes we don't know how to identify what is significant osteoporosis that will lead to a broken bone, but if you get the test, you can really see if you have tremendous amount of bone loss and then you'll know to be careful or even be able to talk to your doctor about things you might be able to do to increase your bone integrity, like medications that was suggested earlier. >> LAURIE: We received several questions regarding aging and skin integrity with SCI. Questions like prevention material, new equipment that might be available, wheelchairs, that sort of thing. Could you comment on that? >> SUZANNE: Those are great -- skin problems and skin breakdown has to be -- over the lifetime of someone with a spinal cord injury, one of the most or the most significant secondary conditions, just because it's so common but it's so costly and it's so much affects quality of life and then it also leads to other secondary conditions such as infection as well. I know we are going to look at exercise and how that relates to skin integrity or pressure sores through there center. For example, if we can get people out exercising, will we actually be able to prevent some skin breakdown. The suggestions about equipment or just aging and skin integrity are also very good. It would be good to put together sort of a synopsis -- kind of like the PVA does, but maybe to update it as well, looking at the new equipment that's out there, but also just to summarize once you have some skin breakdown, how much skin integrity is lost then. Because once you have a breakdown in an area, you lose about 20 percent of the strength of the skin and then that kind of multiplies each time, but that's a great suggestion putting those together for people. >> THILO: and also just to add that I think we will develop in the process more of these resources or when you check back in the process at the virtual resource network, we'll point you to additional resources. We haven't put this up yet. We're in the very early days of really setting up this virtual resource library, but you will find more information about -- that is available to you. And, again, also we seek your input and -- yeah, telling us basically what information or material has been helpful to you and what would you like to see in information that you can use. So just follow this process with us over the next five years and you will probably find a lot more information that is integrated in one site at our virtual resource network. >> LAURIE: There is a question about maximum heart rate and what should be the maximum heart rate while exercising for someone with a spinal cord injury? I exercise with a hand cycle and find it difficult to raise and maintain my heart rate to the recommended levels for the nondisabled population. >> SUZANNE: I love that question. That's actually a great question. It's very intelligent and well thought out but it's a very, very significant point. Because of the spinal cord injury, the maximum heart rate for someone should be different just as the person who asked the question is basically suggest than if the person wasn't spinal injured and that's what we'll be looking at as part of one of the projects on the research side, the project that I described earlier when we looked at blood lipids, cholesterol, what we'll be doing in that study is we're going to be asking several hundred people with spinal cord injury to come in and we'll do -- we'll basically put them on the hand cycle and do exercise tests on them and as part of that we're actually going to try to determine that number and answer that question. So hopefully when you come back to us in the future we'll actually give that you answer, but it hasn't been done yet, but hopefully that is one of the answers we'll be able to give you in the future. >> LAURIE: Okay, great. No another question is, is the SCS, safe at home unsupervised, should I worry about too much electricity? I bought a machine that moves my legs, does that work as well? >> SUZANNE: Now, the S. C. S, there are several machines out there, and usually their use is in the hospital, but I would think that if -- with proper training you could use it at home. You just put the settings and the frequency of electricity at certain points and you should be safe. You don't have to wore by the level of electricity. The thing you have to worry about is if you have sensation, it can be painful, but again, if you don't have sensation, that's usually not an issue. Now, the question about a machine to move the legs, it really depends on what that machine does because the key osteoporosis, at least -- and actually just building muscle mass is those muscles need to be contracting and that's what the SCS machine that I described is doing. It's stimulating the muscles to contract and then they are also pulling on the bone. What I described is that we'll be looking at osteoporosis and another thing we'll be looking at with the SCS is are we preserving or increasing someone Ms. Muscle mass. So if your machine is just moving your legs, it's probably not doing too much in terms of preserving the muscle mass or the bone, but I'm not really sure what the machine is actually doing. >> LAURIE: Okay. There is a question about bowel programs and wondering what kind of research you'll be doing relating to helping folks become more independent in their bowel programs. >> SUZANNE: Well, I think -- we're not going to be doing a lot on bowel programs specifically, but as part of some of the projects we'll be looking at how different types of exercise -- we can look at how different types of exercise may positively or negatively affect the bowels. So I know as people age especially, changes in the bowel program are -- is one of the most important issues that I hear from people. So if it would be helpful that we look at that more or, you know, look at the effect of the bowel either from medications or from therapies we're providing, then that's a good suggestion. We should do that. >> THILO: Also I can say from our work with the peer mentors, they have been very helpful in indicating what has worked for them in the past and why it is very important really to perform or adhere to a strict bowel management program and they have really been very helpful in supporting the clinician recommendations in this effort and advice they provide especially to newly injured patients as they come through the hospital has been very helpful in reinforcing basically what individuals have heard from their clinicians. So we work through our peer mentoring component also on that and as we hear more advice and repeat it back to the clinicians and agree with them the strategies that the peer mentors advise on and so that will be another channel to address this. >> LAURIE: Another question on my feet swell quite a bit during the day despite sleeping with my legs elevated. Will aerobic exercise help to decrease swelling? >> SUZANNE: It might. It depends on the person. It depends on just the cause of the swelling. But I suspect there is no other cause of the swelling that we'd consider like infection or anything like that, but it very well could. I know that's also a significant problem for many people. >> LAURIE: What other exercises can be done to prevent rotator cuff and wrist injuries. >> SUZANNE: That's a great question, too, and I had seen several questions or comments from people who had exercised quite a lot over the course of their lives and now they're really having problems with rotator cuff issues. One of the biggest issues in anyone who uses -- you get an unbalanced shoulder basically where the front chest muscles actually get much stronger than the back muscles in the back of the shoulder, and it actually pulls the shoulder out of proper alignment. So there is a couple of contributing factors to rotator cuff problems. Part of it is just plain and simple overuse. You're using your arms and shoulders for what the legs were meant to do and that's rough on them over the course of many, many years. But the other issue is shoulder muscle imbalances, and so there are some specific exercises that I can't really relay in this setting, but in simple terms, what you should try to do is strengthen the muscles in the back of the shoulder girdle in the upper back and stretch out the muscles in the chest and the front of the shoulders so they become more flexible and that helps to get the shoulder alignment back in place. >> LAURIE: Anything on the wrist injuries? >> SUZANNE: Oh, I'm sorry. Was there anything specific about the wrist injury? >> LAURIE: No, just what can be done to prevent wrist injuries, exercises that can be done? >> SUZANNE: the same is true for wrist injuries, is you want to maintain a balance and so in my opinion, if you use a wheelchair, you get enough wrist exercise as it is, and so what you want to do as opposed to trying to make yourself stronger is you want to try to make yourself more flexible because you will injure yourself through overuse, even if you have strong muscles because as muscles get bigger they tend to get tighter, too. So try to keep that wrist flexible and the other thing you want to really try to prevent is just the carpal tunnel syndrome as well and sometimes you can do that just with stretching exercises or just using the proper braces. >> LAURIE: Okay. A question has to do with what is the best method for measuring body fat in a person with spinal cord injury? >> SUZANNE: That's a very good question and we want back and forth on this because we are going to be looking at this as part of some of the studies in the RRTC. And the best method is a little bit -- it depends on your criteria. The best method really is kind of the old fashioned method in dipping in water or dipping in aghast, there is a special -- it's a pod that's actually filled with a gas and basically just to see how much water or gas your body displaces. Now, that's the best method R but for people with a spinal cord injury, it doesn't always work that well because it requires changing into a bathing suit, having someone usually assist you transferring either into the big pool or into the pod I described, and then the positioning once you're in there is a little bit difficult. So we want back and forth on this, and we kind of went back to the -- you can measure body fat and muscle using the dexa scan I was describing earlier and at the same time you can look at bone and measure your osteoporosis. All you have to do for the dexa scan is just lie on your back on an examining table or the special X-ray table in basically an X-ray arm goes over your body. So taking into account what needs to be done to conduct the test and then what gives you the best results I really think the dexa scan is really our best option. >> LAURIE: a question about what are other ways to do stress tests for people with spinal cord injuries? You mentioned stress tests earlier. >> SUZANNE: Right, and the typical stress test is done walking on a treadmill. What we'll be doing -- because we will be conducting these exercise stress tests as part of some of the studies is we will put people on hand cycle also and conduct the stress test. Now, that's what's typically done. We're actually going to investigate how well putting someone on a hand cycle or an armergometer can stress the body. Again, if someone is able to walk, you can put them on a treadmill. You can give them a little body weight support through a harness if they need a little bit of support or a little help with balance. And that's possible. Beyond that, to do a stress test, you can actually give someone medications that will stress the heart. So beyond those types of exercise, you would want to go with one of the medications that stress the heart and those are really commonly done and they are very, very good tests. >> LAURIE: Okay. There is a question about exercise and physical activity and videotapes that are available or where can you -- what's available for exercise? Where can you go for exercise? Are health clubs accessible? Are videotapes available? >> SUZANNE: and that's again part of what we're going to be doing. We're actually going to be -- we talked earlier about we really, really hope that people with spinal cord injury will become a part of the center and work with us, and that's what we're planning as one of our studies and the one that we're looking at different kinds of exercise programs, we're looking at people exercising in the home and exercising in gyms and exercising with a variety of different tools, let's say, for example, wheelchair rollers or the giant rubber bands or videos, and we're actually going to be working with people with spinal cord injuries to the find a variety of different kind of exercise programs using all those. And what we can do as part of this is actually put together sort of a database or a list of the different exercise resources and how to get them. If that would be helpful to people. >> THILO: One of the comments we received actually pointed to an older video from the Eastern Paralyzed Veterans Association, for quadriplegics according to this person who wrote in. It's about 15 years old. So there are resources out there, but we will provide through the virtual resource network just like Dr. Groah just said, we will provide a more updated list of resources through that virtual resource network and we'll produce our own additional videos on specific issues to fill the gaps on where we feel that there is not good information out there. >> LAUREL: Thilo, along those lines, some -- gosh, some time ago we had a webcast featuring Dot Nary and Kathleen Froehlich who they had completed a study of -- an exercise program for folks both at home and in a group type organization. So I invite people to look at your list of previous webcasts and check out the one by Dot and Kathleen and it's interesting as well. I think it may have extended beyond just folks with SCI, but I suspect it's applicable to other specific groups as well. >> THILO: That's good advice. >> LAURIE: This is my last question that I have here. And it's related to increased spasticity in the lower extremities. Will exercise help to prevent spasticity? >> SUZANNE: Well, that's a little bit hard to say because spasticity can increase over time for a variety of reasons, but you know, if there is no underlying cause -- additional underlying cause of the spasticity, like a medical problem such as often if people have bladder infections or little cysts in their spinal cord or any other type of inspection or an ingrown tow nail or a pressure sore, that will increase the spasticity. Well, in that case, no exercise is not going to help it because you've got to get rid of the cause of the increased spasticity. I think exercise in the sense of maintaining your flexibility over time should prevent spasticity, yes. >> LAURIE: Okay. >> LAUREL: I had a question about -- I received a question about the cardiovascular disease and its early occurrence in people with spinal cord injury, and it was -- does the earlier occurrence relate to a way of life that's immaterial posed by the impairment or is it because of something related to the spinal cord injury and the spinal cord being damaged? >> SUZANNE: We don't know that, and that's a question -- I've done some research already in this area and that's sort of the unanswered question that we throw out. And I don't know if, you know, given our level of scientific knowledge at this time if we can answer the part about is there something unknown going on that's causing this accelerated aging specifically cardiovascular problems. I think we can assume that the imposed lifestyle changes, yes, is definitely contributing to the cardiovascular disease risk. >> LAUREL: So along those lines, folks with other kinds of disabling conditions than spinal cord injury but are still sort of -- promote a sedentary way of life could probably benefit from some of the resources and some of the research that's being conducted by this RRTC? >> SUZANNE: Definitely, without a doubt. >> LAUREL: So, Laurie, we've exhausted our questions? >> LAURIE: I think so, yes. >> THILO: Well, I think this was very -- a very interesting discussion and debate and interesting information exchange and I believe the channels are still open for additional questions that can be posted. >> LAUREL: That's right. >> THILO: and additional comments or questions are probably still up on the website of this webcast. So, again, if you have any additional comments or questions, observations regarding what are your personal experiences with secondary conditions or as a person with SCI, what are your personal experiences with exercise and physical activity and what would you like the RRTC on secondary conditions and exercise to accomplish? Then please send us your E-mails and we'll get back to you. >> LAUREL: You know, Thilo, what we'll be able to do is set up a discussion forum in which people can -- where people can post their questions or their comments or their observations, and also if -- so that you all can respond to those that are appropriately responded to, then we can maintain that discuss forum and if folks want to just come back to this same page, web page, we'll have a new link on there probably starting tomorrow for them to click on to get to that particular discussion forum. >> THILO: Excellent idea. >> LAUREL: and along those same lines, this webcast will be archived and people are interested can come back to this same web page and they can -- they will be able to click on the audio and listen to audio as well as a transcript that's being produced right now. So if folks want to continue sending stuff in, please do. >> THILO: Okay. Yeah, I think that being said, I think just stay with us and follow the progress of this RRTC and be a member -- become an active partner of our activities. >> LAUREL: We down here at ILRU are very appreciative of being asked to work with you all on this program. We have at least three staff members who have a spinal cord injury and are fairly ardent in wanting questions answered to their issues of daily life and long term aging. Some of us would say that some of our staff members haven't aged much to look at, but the issues that are raised regarding the hidden factors are sobering and we expect through the virtual library to present to people findings from the program in the research and look forward to greater participation on this. Laurie, do we have other questions? >> LAURIE: I think that's it. >> LAUREL: Suzanne and Thilo, thank you very much for this presentation. It's just been terrific. >> SUZANNE: Thank you for the opportunity. This has been great. And it was really great input from a lot of people as well. >> LAUREL: No lack of issues to address. >> SUZANNE: Right. >> LAUREL: Encouraging in that regard. Thilo, I think we'll close unless you have further to add? >> THILO: No, I'm fine. Thank you again for setting it up and thanks everybody for your input. >> LAUREL: We'll be sending out an announcement when we have the next town hall meeting and again I'm sure it's going to be Thilo and Suzanne will use it as an opportunity to invite questions and observations from the field as well as invite them to be submitted on an ongoing basis. This webcast today is part of this Research and Training Center sponsored by NIDRR, and we appreciate the contributions that NIDRR has made to the field with regard to addressing issues that people with disabilities face, spinal cord injury as well as others, and we appreciate Thilo, you and Suzanne's emphasis on disseminating findings to those of us who aren't researchers, but have just a huge stake in the outcome. This webcast was made possible in part by our two colleagues who are off-site, Rob Dickehuth is the technical person who takes the telephone lines and somehow weaves them into the website. Rob Dickehuth at Baylor College of Medicine and Marie Bryant is the person who is doing the realtime captioning which appears on your screen, and both of these as we say will be available for people who wish to listen to this at their own time, virtual time. The transcript will be there as well as the audio as well as the handouts and the pictures. And also to our team at ILRU who includes Sharon Finney and Marj Gordon and Rachel Kosoy and Dawn Heinsohn and Mark Richards. Thank you for your contributions to this webcast and we hope that you all in the field will see when we send out other announcements of webcasts that you will join us and we look forward to having you participate in future ones. So thanks to all of you and good afternoon.