Diane M. Rowles, MS, NP Nurse Practitioner, Shirley Ryan AbilityLab (Formally the Rehabilitation Institute of Chicago) https://facingdisability.com/expert/diane-m-rowles-ms-np So, what do you do with a catheter during sex? For people who are on intermittent catheterization, the in-and-out catheterization, I usually recommend to catheterize prior to having sex. Because we talked about those sacral arc reflexes, well the bladder has a reflex, and the bowel has a reflex, sex has a reflex. So, remembering that nerves are microscopic and very close together, sometimes when you’re trying to stimulate the sex reflex you can hit the bladder reflex, or sometimes when you stimulate the bowel reflex, you can hit the bladder reflex. So in order to prevent incontinence, I recommend that people empty their bladder prior to intercourse, just so that there’s no accidents. If they do intermittent catheterization, for a female it’s easy just empty the bladder, and its empty and its fine. For men, sometimes catheterization stimulates an erection because it’s that reflex erection. The important thing to know is, when you stimulate a reflex erection, you’re probably going to want to use that erection for intercourse. Because if you take the catheter out, let the erection go away, it’s going to be harder to stimulate a second reflex erection, for most people. So I always tell people kind of foreplay, do a little bit of catheterization, a little more foreplay, and use the erection that comes from the catheterization, if there is one. If a person has an indwelling catheter in, they have two options—they can take it out and have intercourse, the things that they need to remember is that they can’t put the same one back in, so they have to have another one to put in, and that can get expensive if they have sex too frequently— depending on their frequency of sex I should say. And if they can’t put it in themselves because of limited hand function, they have to have somebody around that can put it back in for them. And it can’t stay out too many hours because of one incontinence, and two, again, the autonomic dysreflexia if their bladder overfills, or prevention of a urinary tract infection. So take it out, not a problem, put in a new one when you’re done. For people who can’t afford to have extra ones, or people who don’t want to take it out, people who it’s fine in, it’s definitely a personal choice, the catheter can be left in. Very simple for women, just tape it out of the way, because sex is a different hole again, and so you just tape it out of the way. For men, what is recommended is leaving a large loop of catheter at the end of the penis, so that if that person does get an erection, there’s enough catheter for the penis to climb, and then placing a condom over it. The condoms not necessarily for contraception, it’s to prevent urinary tract infections, because you don’t want sexual juices to climb up the catheter and cause infections. So what I usually recommend to people is to put a bunch of catheter at the tip of the penis, put a condom over, and then go ahead and have intercourse. The nice thing is is if a person does not get a great reflex erection, so the penis doesn’t get real hard, the rigidity of having the catheter run down along the side of the penis actually can help stimulate their partner, so it actually can help with stimulation of their partner, so it can be a good thing. One thing that is very common is people say, “Well Diane, having that urine bag is a real turn off.” So clamp the catheter, get rid of that urine bag, put the urine bag in a pillowcase, cover it with a towel, put a long piece of extension tubing on, throw the bag off of the bed—any way to enhance the romance, decrease the focus on the urine bag.
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David Chen, MD Medical Director, Spinal Cord Injury Rehabilitation Program, Shirley Ryan AbilityLab (Formally the Rehabilitation Institute of Chicago) https://facingdisability.com/expert/david-chen-md There’s a common type of pain that we call dysesthetic sensation, or you may hear a term neuropathic pain or nerve pain, which, people have compared to, like, phantom sensations in people who have lost their limbs because of amputations. While the reasons for them may be different, the underlying mechanisms for it may in fact have some similarities. There is some belief that the reason for those unusual sensations may be because of signals that are generated up in the brain. Now normally there are unconscious signals, sort of what we can call feedback signals, that go back and forth between different parts of our body and the brain. And there is a belief, a theory, that after a spinal cord injury, because those signals from that part of the body back to the brain are now blocked, and after a period of time the brain starts to create signals of its own to make up for the lack of signals that are coming from the body. The reason with think that may be taking place is that many of the medications that are used to help manage this neuropathic pain we know work essentially up in the brain, not out in the periphery or out in the area of the body where the person can’t normally feel. So because of that, there’s a belief that these signals are generated in the brain, and why these medications are effective in helping minimize these painful sensations.
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David Chen, MD Medical Director, Spinal Cord Injury Rehabilitation Program, Shirley Ryan AbilityLab (Formally the Rehabilitation Institute of Chicago) https://facingdisability.com/expert/david-chen-md When you use the term “incomplete injury,” a common myth or belief in the public is that incomplete injury means that the spinal cord has not been completely cut. Conversely, when people think about the term “complete injury,” a common mistake is they believe that the spinal cord has been completely cut. The great majority of injuries to the spinal cord in different types of accidents and events are contusion injuries. Very rarely is the spinal cord completely cut, or what we called transected. So that is not what we mean by the term “complete” or “incomplete injury.” An incomplete injury is a definition that we use to try to describe the nature of someone’s condition at the time that an evaluation is being done. And by definition, an incomplete injury means that an individual, after an examination or by an examination, is found to have some preservation of sensation or motor function at the lowest segment of the spinal cord. And how that is determined is, during the evaluation, as the different areas of the body are being tested, one part of the examination is to test for sensation around the anal opening. And if an individual can feel that sensation through the examination, that means that there is some preservation of sensation. How we test the motor aspect of that is, we ask the individual during the examination to imagine that they’re in a movie theater, and they’re really into the movie, and they feel, all of a sudden, you need to go to the bathroom , let’s say, have a bowel movement. But that movie is just too good, and they don’t want to get up to go, so they hold it. That holding it is using muscles at the very end of the spinal cord. So during the examination, we ask the individual to try to tighten up their butt muscle, to try to hold a bowel movement. And, if they have some ability to do that, that’s an example of motor function that’s been preserved at the lowest end of the spinal cord. So if an individual has either some sensation down in that area, or some ability to contract that muscle, that is an incomplete injury.
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Diane M. Rowles, MS, NP Nurse Practitioner, Shirley Ryan AbilityLab (Formally the Rehabilitation Institute of Chicago) https://facingdisability.com/expert/diane-m-rowles-ms-np Right now there are about five options available to help with erectile dysfunction. First easiest, what you see on the TV the most is the oral medications, the oral stimulants. The good news is those oral medications work in about 80-percent of men with spinal cord injury, which is wonderful, very, very high. A lot of urologists will say, “Well then you don’t have a problem with erectile dysfunction,” because 80-percent is probably higher than the general population. The second option, which is also a first line, is the vacuum tube turnescense or the vacuum pump. Clear plastic tube, 14-inches long, and it’s purely mechanical, non-invasive, not medications, doesn’t interact with anything. But what you do is put it over the penis, suck the air out, pulls the blood into the penis, pulls into an erection, and then put a constriction band down around the base of the penis, and that holds the penis erect. The third option is injections. Usually, I prefer to use those when the two first options don’t work, or when one of the first options doesn’t work and the person doesn’t want to use the other option. But it’s usually my second line of treatment, is the injections. And that’s of a mediation called Alprostadil and it is injected directly into the sides of the penis into what’s called the corpus, which is the two tubes that go down along either side of the penis. First I want to say it’s a teeny-tiny needle, because if you think about injecting into the penis, everyone’s eyes get really big and everyone takes a big, deep breath, which is understandable. It’s a teeny-tiny needle; I even have men who have sensation, who say that this is painless, okay. But the injection, it goes into the side of the penis and it works very, very well. It works essentially in everyone up to the right dose—there’s a handful of people it doesn’t work in, but it’s actually very responsive. The fourth option is one that is out there, it’s called muse, M-U-S-E. It’s Alprostadil, it’s the same medicine as the injections, but it’s a urethral suppository. And when it came out, it was when we only had the injections and maybe the pump, and we were all excited because we thought, “Oh good, we’re not going to have to use injections any more.” Well time has shown in the spinal cord world, that it doesn’t work very well with men who catheterize. The way it’s intended to be used is right after a man voids, put the urethral suppository in, rub the penis, and it melts and it’s absorbed, and then the smooth muscle relaxes and the blood engorges the penis. So we thought well, when you catheterize there’s probably not enough lubricant in there, so there was lubrication—and when I say “we” I don’t me, I mean the spinal cord world—but lubrication didn’t seem to help. So thoughts now are maybe that if somebody is catheterizing repeatedly, or there’s a catheter in, there’s probably microscopic adhesions along the urethra and the medicine just not absorbed well. So Muse tends to work really well for men who can void on their own, does not tend to work well with men who catheterize. So why do I bring it up?—because I think people need to know about it, because if they read about it on the Internet, or somewhere else, they need to know, “Well is this something for me or not.” The fifth option are penile implants. And they’re out there, they’re a surgical intervention that urologists generally do where a mechanical device is surgically implanted into the penis and it is a penile prosthesis. The complication rate of men with spinal cord injury with penile prosthesis is about 11-12 percent, in the general population it’s one percent. So the risk is higher—and the other thing to remember is that spinal cord injury happens to younger people, and so knowing that all mechanical devices have a life span of a mechanical device, it may not be as long as the lifespan of a person with the spinal cord injury. So you have to consider whether you would do multiple surgeries in that area or not. And the risk of multiple surgeries in that area, the development of scar tissue. So my personal preference, and this is, you can talk to six people and they may say something different, but my personal preference is to see if anything else works and use the penlie prosthesis as absolute last resort, and really, I have a hard time considering it for men who are real young.
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Diane M. Rowles, MS, NP Nurse Practitioner, Shirley Ryan AbilityLab (Formally the Rehabilitation Institute of Chicago) https://facingdisability.com/expert/diane-m-rowles-ms-np So, fertility in men after a spinal cord injury, there’s a couple of things to consider. One is the ability to ejaculate. The second is semen quality and quantity. So, considering the anatomy and physiology, the two centers that control ejaculation in the spinal cord injury are T11, some folks will say T10 to L2, the other is S2 to S4. T11 to L2 controls semen omission, which is the release of the semen, and it comes up and sits by the bladder. The S2 to S4 controls ejaculation proper, or the propulsion of the semen out. Unlike erection—most men with spinal cord injury get some form of an erection—far fewer men after spinal cord injury ejaculate, quote-unquote, “normally,” or without help. Because it takes both centers, you have to have the release of the seamen, and the propulsion of the semen out for it to go normally. So if you read the statistics, less than 10-percent of men with complete spinal cord injuries—complete being no motor, no sensation below their level of injury—ejaculate normally. Incomplete spinal cord injury is up as high as 70-percent to 80-percent. So what do we do to help if somebody doesn’t ejaculate and they want to father children, or what if they don’t ejaculate, and they just want to know what their sperm count is. So, there’s two procedures that are commonly done in the spinal cord population. One is vibratory stimulation—we take a massager, flip the penis up on the belly, and we massage. What that does is it stimulates that S2 to S4 sacral arch reflex, and stimulates ejaculate to come shooting out. That works on about 50 to 60-percent of the people we do it on. Because we’re stimulating a reflex, it obviously works best on men who have reflexes after their injury. So it generally works best on people with upper motor neuron lesions. For people that that does not work on, there’s a procedure called rectal probe electrical stimulation, or electroejaculation, which is exactly what it sounds like. The person is placed on their side, a rectal probe is placed, electrical volts are stimulated through. But that stimulates the higher-up part of the spine, stimulates the pudendal nerve, the T11-L2 center, and that stimulates semen emission. So then, underneath the scrotum is milked and the semen comes out. That’s successful in over 90-percent of people we tried, so that’s very, very successful. Now the other thing to consider is that infertility in our world, and infertility treatment in our world is huge, it’s out there, and everything that they use for infertility in the able-bodied population, we have available to us in the disabled population also. There’s procedures like Tessie that can also be done where they directly aspinate seamen, or the sperm, from the male, so a surgical procedure that’s done. Generally in the spinal cord world, we start with either vibratory stimulation or electroejaculation. And, if that’s not successful, then we’ll refer on to something that’s more invasive, like a surgical procedure. Sperm quality does not appear to be predictable by level of injury, or completeness of injury. We do know that there’s a tendency for sperm quality or quantity to go down after spinal cord injury. That’s true for some people. Other people, their sperm quality or quantity doesn’t decrease at all. The only way to know after a spinal cord injury is to collect a sample and have it analyzed. Now the theories on why sperm quantity or quality may go down—is it hormone changes?—trauma to the body?—is it poor temperate regulation, so the sperm can’t live?—is it antibodies?—is it frequent urinary tract infections?—frequent antibiotics?—chronic medications?—is it that this happens in young men sometimes, and we don’t know if they went through a normal puberty or not, so we don’t know if they would have had fertility issues with or without their spinal cord injury?—so there’s a lot to take into consideration. As a clinician, all of that’s nice to know, but what I really need to know is I need to collect a semen sample and have it analyzed. And then, again, we can use all the fertility things that are available to the able-bodied population to help improve seamen quality if it is altered, and help with pregnancy. Now, the other important thing to know is that these procedures that we do to collect the semen, the vibratory stimulation can be done at home. And I can teach the significant other how to inseminate at home, and it can all be done at home. The electroejaculation needs to be done in the hospital clinic. Either procedure, we collect the semen into a cup and it’s inseminated.
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Robin Dorman, PsyD Clinical Health Psychologist, Northwestern University Medical Center, Chicago https://facingdisability.com/expert/robin-dorman-psyd In the short term, it’s very easy to, kind of deny your own needs. In the short term, it’s very easy to put the other person’s needs first, to sacrifice nutrition, to sacrifice sleep, to sacrifice exercise, to sacrifice their own emotional coping, and they can do that very well. And so, usually the people that don’t relate to the idea of needing to care for yourself in order to be a good caregiver, are not going to relate to that because it isn’t true in their experience. The hard part is, that with time, all of that neglect accumulates, and the caregiver starts to see signs of stress, which can be anything from emotional pain to irritability, just having a shorter fuse, and snapping more easily. To disrupted sleep, to changes in appetite, to digestive changes. Pain in—headaches, back pain, neck pain, diffuse, kind of, discomfort without even really knowing what that is. You know, depressed feelings, on, and on, and on, the signs of stress can start to show. And, it’s amazing how often people will still ignore those, and let those go. Because you can, you can if you want to, and if you’ve decided that’s the important thing for you to do. But in the end, when you start to feel those things build up, you find that the stress itself, and the guilt can become another being, and can sometimes put a wedge between the relationship between you and the person who you’re trying to be there for. So, the guilt is a very real thing, and something that, you know, really needs to be, kind of, addressed head on.
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Diane M. Rowles, MS, NP Nurse Practitioner, Shirley Ryan AbilityLab (Formally the Rehabilitation Institute of Chicago) https://facingdisability.com/expert/diane-m-rowles-ms-np So let start first with the anatomy, and I think that will help. In the spinal cord, there’s two areas that control sexual function. One is from T11, and some books will say T10, to L2. The other is S2 to S4. T11 to L2 for men controls what we call psychogenic erections, erections where the stimulus is in the brain—seeing somebody naked, looking at a magazine, dreaming where the stimulus starts in the brain. That stimulus goes down the spinal cord; the T11-L2 center flips it out and stimulates a psychogenic erection. The S2 to S4 center is a reflexic center, and what I mean by reflexes is that the message doesn’t have to go to the brain for a reflex to work. A reflex, the message goes into the spinal cord, loops around and comes back out. So people who have injuries high up in the cervical level, the high thoracic level, if their injury is complete, meaning no messages are getting through, then they’re likely not to have psychogenic erections. But all of the damage to their spine, all of the swelling is high up in the spine. The bottom part of their spine, that S2-S4 part of their spine, is intact and working, it’s just not connected to the brain. So the reflexes can go through that part of the spine, it’s actually called the sacral arc reflex, and there’s many reflexes that go through that area. But the reflex erections, so reflex erections are erections stimulated by rubbing the inside of a thigh, masturbating, playing with public hair, catheterization anything that’s external, the message goes into the spine, loops around and comes back out and stimulates an erection. So like I said, people who have higher injuries have more reflex erections, less psychogenic, if their injury is complete. Okay, now people who have low injuries, below L2, the very low paras, the damage and the swelling is at the bottom of the spine, more likely to interfere with the reflexes. They’re not as likely to have spasms and other reflexes. But, that T11-T2 center is still connected to the brain, so they get psychogenic erections. So for men after spinal cord injury, most men after spinal cord injury get some kind of an erection, whether it’s psychogenic , whether reflexogenic. There are a handful of men, and usually it’s right in that T11-L2 center, that may not get any erection at all, but that’s not the majority of people. So we have psychogenic and reflexogenic. The other thing about reflexogenic erections is that most people will say that they can get an erection, but they can’t always get it when they want it, it doesn’t always get hard enough, or it doesn’t always stay long enough. That’s the vast majority. Other people say they can get it every time they want it, it gets hard enough, it lasts long enough and they’re fine. Other people say they don’t get any.
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David Chen, MD Medical Director, Spinal Cord Injury Rehabilitation Program, Shirley Ryan AbilityLab (Formally the Rehabilitation Institute of Chicago) https://facingdisability.com/expert/david-chen-md For many years, the treatments for spinal cord injury were very limited, and the research was very limited in that area, because we really didn’t have a good understanding of everything that happens after the point of injury to the central nervous system, and to the spinal cord. In the last two decades, our understanding of just all the things that happen, from the nerve level, to the cellular level, about how the immune system is involved after spinal cord injury, has grown exponentially. And because of that, we now have many more ideas about different treatment strategies that might be able to help at different points in time after an injury. So for example, we know with a spinal cord injury that a natural thing that’s set off is an inflammatory reaction. Just like if you were to, in a sporting injury, twist your ankle, the natural event that happens after spraining your ankle is swelling. Swelling in the spinal cord is not a good thing. It can cause further damage to the nerve, because it puts more pressure on the spinal cord. So now, a number of investigators are looking at different treatments that can be given after an injury—perhaps 24 hours after an injury, 48 hours, 72, a week after injury— that hopefully might modulate and dampen the natural mechanisms that take place after an injury, that often times is harmful to the spinal cord. So when we look at different treatments that are currently being studied, and that may be beneficial and available in the near-term future, some of these treatments are aimed at modulating the immune system. They may be aimed at optimizing the environment within the spinal cord for the nerves to recovery themselves. There are even some treatments that are being proposed that might help these nerves that have survived the injury to re-myelinate themselves, in other words to re-grow the insulation around them that is often times damaged after a spinal cord injury, that causes the nerves not to function. And ultimately, there are even research that’s going on looking at the possibilities of either regenerating or re-growing new nerves.
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Diane M. Rowles, MS, NP Nurse Practitioner, Shirley Ryan AbilityLab (Formally the Rehabilitation Institute of Chicago) https://facingdisability.com/expert/diane-m-rowles-ms-np So, orgasm and sensation. If a person does not have genital sensation, then it’s going to feel different than it did before. And though we can help men have babies, we can help with erections, we can help with ejaculation. For women, we can do the pregnancy thing, we can do all of that other. What we have to realize is that we cannot give sensation back. So, is it enjoyable? The vast majority of people with spinal cord injuries say that sex is very enjoyable. But they describe it, orgasm, as a psychological orgasm, rather than a genital orgasm. So, it’s very important for them to communicate what feels good to them. And they may not know at the beginning, it may take some experimentation. Where on their body do they have sensation? What feels good? A lot of the erogenous zones above the level of injury are the face, the back of the neck, down the back of the shoulders, the nipple line, and that’s where I said in the shower is very nice because it gives different sensation. So, it’s going to be very important for people to communicate with their partner what feels good, what doesn’t feel good. So, I encourage people to experiment on their body what touch feels good and what touch feels bad. There’s also areas that people sometimes don’t think of, and that’s areas that are hypersensitive after their spinal cord injury. Some of those areas are the band-like sensation, especially people with paraplegia who lose sensation in their mid-thoracic area. A lot of times they have a band that goes all the way around their body, that’s right between where they lose sensation and have sensation. And generally, that’s a very uncomfortable area to touch, but with the right person and the right setting, it can be very erogenous. So, I advise people to have their partner touch there. And by touch, it doesn’t have to be hands touch. It can be tongue touch, eyelids touch, toe touch, kissing, whatever touch feels good and is acceptable to both partners. Other areas—some scars are hypersensitive, some have decreased sensation. So experiment with what scars, particularly chest tube scars are usually hypersensitive. And again, like I said, the face, the neck. So what feels good?—what doesn’t feel good?
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David Chen, MD Medical Director, Spinal Cord Injury Rehabilitation Program, Shirley Ryan AbilityLab (Formally the Rehabilitation Institute of Chicago) https://facingdisability.com/expert/david-chen-md Within the spinal cord, the nerves that go to the different parts of the body—to the arms, to the hands, to the heart, the chest wall muscles, to the legs, to the organs in our body—the nerves come out at different levels of the spinal cord. You can roughly divide the spinal cord into four broad segments: you have the cervical segment, which up here in the neck region; you have the thoracic region, which is from about the top of your collar bone to about your mid-back; and then you have what we call the lumbar and sacral regions, which are at the lower end of the spinal cord. And at each one of those four different levels, the nerves come out that go to the different parts of the body. The nerves that go to the arms and to the hands come up in the cervical region. The nerves that come out to the legs, to the bowel and bladder, come out at lumbar and sacral segments. So if an individual has an injury to the spinal cord at a particular level, it’s going to affect the nerves that come out from the spinal cord at that level and below. So if you have an individual who has an injury up in the cervical segment, the likelihood is that it’s going to affect the nerves that go to the hands and hands to some degree, and then all the other nerves below that region. If an individual has an injury let’s say in the thoracic or lumbar region, then, theoretically, the nerves that go to the arms and hands, which are up in the cervical segment, are spared; therefore, the function hopefully has remained intact.
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David Chen, MD Medical Director, Spinal Cord Injury Rehabilitation Program, Shirley Ryan AbilityLab (Formally the Rehabilitation Institute of Chicago) https://facingdisability.com/expert/david-chen-md A physiatrist is a physician who specializes in physical medicine and rehabilitation. So it’s a specialty of medicine, that focuses on individuals who either through injury, or medical condition, has sustained some type of change to their body that results in them not being able to function as well as they normally could. And so, a physiatrist works with a team of individuals—physical therapists, occupational therapists, speech language pathologists, social workers, psychologists—to help these individuals take what has had happened to them, and to hopefully return to their previous independent functioning level.
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Diane M. Rowles, MS, NP Nurse Practitioner, Shirley Ryan AbilityLab (Formally the Rehabilitation Institute of Chicago) https://facingdisability.com/expert/diane-m-rowles-ms-np I think again, it’s going to vary depending on the person. But some of the common themes that I’ve repeatedly seen over many years, is if the person’s young, not married, in the dating world, fear that nobody will love them this way, fear of more barriers, like the wheelchair is a barrier, feeling like if their sexual function is not a 100 percent normal, “am I going to be able to perform?”—“What I am going to do with my bladder?—“What am I going to do with my bowel?”—all of those personal issues, as well as some self image issues. Not real confident in themselves early on, and that takes a while to build self confidence for anybody who changes anything major in their life, and it’s not different with spinal cord injury. And then there’s for some people, understandably because maybe it is different, maybe they do have some erectile dysfunction, or some change in sensation, or some ejaculatory dysfunction, some people say if it’s not a 100 percent normal the way it was before, then it’s not normal and it’s not good, and that’s how they believe for always. And other people adjust.
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A sneak preview of the first video in a new 10-part series: "Voices of Experiences - Living With Spinal Cord Injury,” created for the in-hospital TV networks of major American spinal cord injury hospitals. It will be available online and for use by other healthcare institutions. The videos focus on the questions, issues and concerns that are most important to patients in the early days after spinal cord injury. In this video, people with spinal cord injuries share what they remember as their greatest fears at first and how they overcame them. Other videos in the series will cover the kind of personal subjects—dating, sex, fertility, relationships, family life—that patients are often unwilling or uncomfortable about bringing up during peer counseling, group therapy or even one-to-one talks with medical and rehabilitation professionals. The series is a joint project of the Shirley Ryan AbilityLab and FacingDisability.com; it is partially funded by the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR).
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Diane M. Rowles, MS, NP Nurse Practitioner, Shirley Ryan AbilityLab (Formally the Rehabilitation Institute of Chicago) https://facingdisability.com/expert/diane-m-rowles-ms-np Oral medications right now consist of Viagra, Cialis and Levitra. And I do not have recommendations of which one or one specific one. I do have knowledge from my patients that some work better for some people, some work better for others. If you read about them, they should all work the same. The keys that I would tell people about, making the oral medications work for them, that frequently health care providers may not include in their instructions, are a lot times the oral medications work best on an empty stomach. Some people say they can have steak and potatoes and three glasses of wine, and their oral medication works fine. Other people know that if they eat that, then their oral medication is not going to work. The other very important thing to know about tryng oral medications is it’s not like it’s said on TV and joked about, you take the pill and you wait, because it’s actually an exchange of nitric oxide at the cellular level that medicines work. So for people with spinal cord injury, you want to take the pill, you want to wait 20 to 30 minutes and then stimulate the penis. If stimulating the penis is penetration, masturbation, oral sex, it’s the skin to skin contact and stimulation of the penis that’s going to maximize the benefit of the medication. And in fact, the medicine shouldn’t work unless you stimulate the penis. But again, a lot of times health care providers who prescribe these medicines forget to tell the patient that. So trial it on an empty stomach, trial it with stimulation of the penis and remember that is going to work about 80-percent of the time. Now one of the common questions people say, “Well, how long do you have an erection for?” Generally, probably 30-40 minutes, again remembering that the stimulation it’s what’s going to help. People also talk about the fact that the commercials say for Cialis is good for up to 36 hours. Generally the best response is within that 20-30 minute stimulate, they get the best response. Many patients with spinal cord injury may get a later response, but generally they say it’s not as good as the immediate one. And that’s for people with spinal cord injury.
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David Chen, MD Medical Director, Spinal Cord Injury Rehabilitation Program, Shirley Ryan AbilityLab (Formally the Rehabilitation Institute of Chicago) https://facingdisability.com/expert/david-chen-md There are a number of, of research groups that are looking at the potential role of electrical-simulation, magnetic stimulation—whether it’s applied on the outside of the body to muscles, or to the spinal cord, or internally, let’s say implanted systems in the spinal cord—and the results of those studies, thus far, are very, very early, and very, very minimal. A lot of work is being done to try to see how electrical stimulation may enhance neurologic recovery in individuals who have had spinal cord injury. But at this point, to tell you the truth, it’s too early to tell where this research may lead to, and if potentially there maybe clinical applications to it. Now from the treatment standpoint, we do use electrical stimulation with individuals who have some residual function. We know that individuals who have some ability to move a small part of their body, although it may not be normal, by using electrical stimulation either to the nerve or to the muscles, in conjunction with their other therapies, that it can be helpful and effective in enhancing the strength in those areas. But at the present time, in areas where a person has no ability to move the muscles, the use of electrical stimulation in those areas probably is not that effective in enhancing neurologic return.
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David Chen, MD Medical Director, Spinal Cord Injury Rehabilitation Program, Shirley Ryan AbilityLab (Formally the Rehabilitation Institute of Chicago) https://facingdisability.com/expert/david-chen-md In terms of the duration of time when an individual may hope to see some return of neurologic function, that will hopefully lead on to greater return, varies a lot from individual to individual. Generally, from experience, we’ve seen that individuals who begin to see some neurologic return, although it may be small, within the first 8 to 12 weeks after injury, tends to be a good prognostic sign for further return of neurologic function. But we’ve all seen individuals who have begun to experience return at time points farther out from 8 to 12 weeks—at three months, four months, five months—who’ve gone on to see a more significant return. And that’s what makes it difficult to predict just how much time it may take to see return of function, and to predict just how much, and for how long you might see that return. A statement I hear from individuals is that, you know, “I’ve been told that I have one year to get back whatever I’m going to get back, and after that point, I won’t see any more return.” The reality is is that there is no internal clock in the body that says, “You’ve got one year from the time of injury, and once you hit that one year time point, nothing further will return.” Again, we’ve all seen individuals who have gone beyond 12 months, beyond 18 months, even as far as two and three years after an injury, and continue to see return of neurologic function that can result in a much higher functioning for those individuals. So there is no internal time clock that says, or alarm that says, “It’s one year from the time of injury.”
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Diane M. Rowles, MS, NP Nurse Practitioner, Shirley Ryan AbilityLab (Formally the Rehabilitation Institute of Chicago) https://facingdisability.com/expert/diane-m-rowles-ms-np I always want to tell people that the likelihood of getting pregnant is the same as it was before your injury. So obviously, if a women has had a hysterectomy, or if there’s some other reason she couldn’t get pregnant before her injury, her injury does not change that. But they can still get pregnant, just as easily as they did before, so if you need to practice safe sex, do that. When a woman does get pregnant, then you definitely want to be to the OB-GYN early, because many OB-GYNs, just because it’s a lack of experience with women with disabilities, whether it’s a spinal cord injury or some disability, sometimes they’re going to consider you more high risk—just because of the disability and their lack of knowledge of that. If you can find an OB-GYN that’s used to women with spinal cord injury, that’s a wonderful thing. Sometimes it takes the OB-GYN who specializes in the pregnancy, and a spinal cord injury provider who specializes in spinal cord injury, and the two of them working together, and that happens a lot. The thing to remember is that the woman with the disability knows her body as well as anybody else, so the OB-GYNs a lot of the time really listen to her. Once she gets pregnant, she can carry the baby to normal term; that’s not an issue. The issues of pregnancy are, statistics show that women with spinal cord injury do have a tendency towards small birth weight, at the birth of the baby. So the baby tends to be a little bit smaller. I’m not saying it’s going to be, I’m saying the risk of that is higher. Also the risk of c-section is higher. In the general population is about 30 percent, so it’s going to be a little bit higher in a person with a spinal cord injury. Is that due to spinal cord injury?—Or is that due to provider-comfort?—we don’t know. But I know people with paraplegia, and I know people with tetraplegia who have normal vaginal deliveries. I also know people with paraplegia and with tetraplegia who’ve had c-sections. And the things that they need to be aware of are that they’re going to have the same risks in going through pregnancy that a woman without a spinal cord injury has—the risk of anemia, the risk of more frequent urinary tract infections. The things that are going to be a little unique to their spinal cord injury is the fact that they may get urinary tract infections easier or more often because they do, due to their catheter, anyway.
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David Chen, MD Medical Director, Spinal Cord Injury Rehabilitation Program, Shirley Ryan AbilityLab (Formally the Rehabilitation Institute of Chicago) https://facingdisability.com/expert/david-chen-md Until now, there really has been, from a clinical standpoint, from a treatment standpoint, very little that we can proactively give or treat with someone who has a spinal cord injury to optimize their potential for neurologic return. High-dose steroids, or methylprednisolone, for about 18-19 years, had been administered after it was found in a large study that it might have the potential to improve neurologic outcomes in individuals with spinal cord injuries. Now the goal of methylprednisone, or steroids, was to try to minimize the swelling, or inflammatory process that took place after a spinal cord injury, with the hopes that by minimizing the swelling, decreasing the swelling, that it would enhance the opportunity for nerve function to recover. Over the years, it’s become clear that, although it was recognized previously that there are risks with high-dose steroids. There are risks to individuals who require ventilators to breath; that it might increase their risk for pneumonias. High-dose steroids can increase the risks for infections and poor wound healing. And as with any treatment that is proposed, you need to find the balance between risks and potential harm, and the benefits that come with it. As time has gone on, we’ve also further looked at the results of those initial studies that were done, in terms of their benefit to helping individuals with spinal cord injury. And there are many who’ve believed that perhaps the benefits of it were not quite as great as we’d initially thought, in terms of neurologic outcomes. And certainly when you balance that against the risks of other medical complications, it’s become more clear that perhaps the use of steroids needs to be confined to a particular period of time after injury. Many centers now will only use high-dose steroids if an individual comes to their care between three hours and eight hours from the time of injury. If a person comes to their care at a period of time later than that, the belief is that the benefits of it may not be as great, and the risks and complications that can sometimes come with high-dose steroids, may far outweigh those benefits.
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Injured in 2008 at age 16, Paraplegic https://facingdisability.com/video-interviews/monserat FacingDisability.com – For Families Facing Spinal Cord Injury I know that a lot of people always say, like, there’s guys out there that don’t care if you’re in a wheelchair, and to me it’s just like, well where are they? Because, like, I don’t know, I find it, like, it does make a difference that now I’m in a wheelchair, I’m not going to say like, “Oh my god, I was the prettiest girl at my school and oh my god, I had all the guys.” But back then I was, I felt attractive. And you know, now that I’m like this, I’m still look the same; if I’m still the same person, why aren’t guys attracted to me now?
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Injured in 1996 at age 31, Quadriplegic https://facingdisability.com/video-interviews/jim For Families Facing Spinal Cord Injuries I would say communication with other people, the Internet, computer voice recognition technology. What I’m wearing right now on my, on my vent is called a Passy-Muir Valve. It allows me to speak on inspiration as well as expiration, I would say, and it, it greatly helps your ability to communicate. Instead of when you’re on a ventilator, you’re only getting, when you only getting positive pressure, you’re only allowed to speak as you’re getting a breath. And so this is really, you know, allowed me to communicate a lot better with people, and for myself—I mean, nobody really even realizes that I’m on a ventilator if I speak on the phone or anything else—so but that is called a Passy-Muir Valve. For everybody that’s on a ventilator and would like to give that a try, it’s very inexpensive. It’s a very small, little plastic device that will go right on the tube of air, and could really increase your quality of life down the road.
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Diane M. Rowles, MS, NP Nurse Practitioner, Shirley Ryan AbilityLab (Formally the Rehabilitation Institute of Chicago) https://facingdisability.com/expert/diane-m-rowles-ms-np For women, the T11 to L2 center innervates the uterus. The S2 to S4 center innervates the vulva and the vagina, so their spinal cord injury does not affect their sexual response cycle. What they’ll notice after spinal cord injury is we think due to the hormone change, the medications, the stress. They may miss a menses, or three months of menses or six months of menses, usually it’s back by a year. And even though they’re missing a menses, they still have likelihood after their menses returns, just to have a child just as if they would without spinal cord injury. So we have maybe an alteration in menses, may stop for a while. The other thing is that they may not lubricate enough, so they may have to use something to help with lubrication. But the sexual response cycle itself is not interrupted.
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Injured in 1970 at 8 months old, Paraplegic https://facingdisability.com/video-interviews/bill FacingDisability.com – For Families Facing Spinal Cord Injury I dated when I was in high school. Let’s put it this way, I think having a positive attitude is rule number-one. And, I think by having a positive attitude, accepting my disability, you know, I dated a lot in high school, frequently in high school. You know, I guess maybe I didn’t have a problem meeting girls because I always had a place for them to sit, right here next to me. After I got married, my wife and I wanted to have children, and I was very concerned with the fact that I went through all the chemotherapy and the radiation therapy at such a young age, you know, how was that was going to affect me being able to father a child. And, you know, went through all the appropriate tests I needed to do to make sure I didn’t have any defects or anything like that, and had the ability to father a child. I have a beautiful girl, young girl, named Hannah, she’s six-years old, and I have a fifteen- month-old son named Jack, and they are the joys of my life.
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Guy W. Fried, MD Chief Medical Officer, Magee Rehabilitation Hospital, Philidelphia https://facingdisability.com/expert/guy-w-fried-md The two ends that I see that are there are one, the bio piece, where you just look at stem cell. You’re looking at it saying, “If I were to cut my median nerve over here, my median nerve would grow one-inch-a-month, and grow exactly to my hand of where my median nerve was innervated.” And, that’s in my peripheral nerve. My peripheral nerve looks very much like my central nerve. If were to cut my neck and I wanted to grow one inch, there’s a good chance I couldn’t cut it. Or if I wanted to cut my brain, it could never do that little growth in there. So, there something different between the fertilizer that we have in the peripheral nervous system, with the genetic makeup. To say, “Grow over here in an arm, but not over here in the brain, or spine.” That is seemingly an easy project, certainly a Nobel Prize, but seemingly an easy project to figure out when these look alike, what in fact is different about them. I think that it’s just a matter of breaking through, and figuring out what is that we can do, so we can gap the injuries. Because the injuries that are spinal cord injuries, they’re not all that impressive. Few are ever severed, few are problematic. You know, if it were a bone, it’d be a piece of cake; if it were a muscle, it’d be a piece of cake. It’s only a real problem because it happens to be a central nerve. If it were any other part of the body, it would be no problem. You do worse to your knee when scrape your knee every time you’re falling, every time you’re getting a black and blue. It’s just very sensitive tissue, and it’s a matter of making sure that sensitive tissue can regenerate. So, that’s hope number one in my mind. Hope number two is the opposite end of just looking at the robotics, looking at the exoskeletons, looking at the Lokomats, looking at the fine technology that you’re looking at and saying, “Why is it that I can’t walk or run, or be the six-million-dollar man?” Well, absolutely I can, it’s just a matter of getting the technology out there, and you should be able to put the micro processors in my knee, in my hip, in my ankle to get me to be able to run 60-miles-an-hour after a spinal cord injury. There’s no reason why you can’t do that. So, those are my two hopes, and I except fully to see them in my lifetime.
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Allen Heinemann, PhD Professor, Feinberg School of Medicine, Northwestern University, Chicago https://facingdisability.com/expert/allen-heinemann-phd I think families need to appreciate that rehabilitation involves learning to do old things in new ways after spinal cord injury. So on the physical side, it’s, “How do I achieve mobility in my community?”—“How do I get in and out of buildings?”—“How do I manage bowel and bladder function?” for example. And, on the psychological side, it’s important to think about what brings meaning to life. “What makes me want to get out of bed in the morning?”—“What are my goals in life?”—“Where do I see myself going?”—“What’s the narrative, what’s the story that unites my, all the events and the days in my life into a meaningful story, that give meaning and purpose?” So, if a spinal injury is initially seen as the end of the life as I knew it, ultimately their needs to be a new life created, and a new way of anticipating a future that’s rich, and meaningful, and rewarding. On occasion, people tap spiritual resources, and think about meaning and purpose in a religious or spiritual framework. Sometimes, they think about it in a more social, giving back to one’s community, or giving to other people. It varies widely on the individual, so it’s consequently hard to say there’s one best way to approach dealing with the psychological and social aspects of disability.
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Injured in 1995 at age 18, Paraplegic https://facingdisability.com/video-interviews/megan For Families Facing Spinal Cord Injuries Yes, that was also, the pain was quite intense, and there was a point where nothing was working. You know, I had gone to specialists all over the country and everyone told me there was nothing they could do. And I finally went to, he was one of the preeminent pain specialist in Houston, Texas, and he basically told me that I was crazy, that I was just making up the pain for attention, and that kind of pushed me over the edge because I knew the pain was real. I didn’t want to live with it any more. I don’t think I necessarily at the time thought, “Oh, I want to die,” but I didn’t want to live the life that I was living. You know the life I was living evolved into pain and a lot of prescription medication, and it just it wasn’t what I, I was not fulfilled with life, I didn’t want to live like that. You know, I mean, that was the bottom. I realized, you know, that a lot of people would be upset if I were gone and that, I mean basically the thought that, you know, after all that my friends, and my mother and my family had done for me, that I would just say I don’t care and give up. You know that’s what was kept me from doing that. So you know, it was hard but at the same time, I mean, I think it’s very easy to allow yourself to fall down that hole sometimes, but then if you realize that’s it’s usually just a temporary thing, that life can get better and does.
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Diane M. Rowles, MS, NP Nurse Practitioner, Shirley Ryan AbilityLab (Formally the Rehabilitation Institute of Chicago) https://facingdisability.com/expert/diane-m-rowles-ms-np Many times when I find out one of my patients is, are pregnant, I will put them in therapy in the second trimester, for a number of things. One, is that they as gain weight; it’s going to change their center of gravity. Things that they might have been independent in doing before—transfers, dressing their lower extremities, putting on their shoes, doing their bowel program—they may not be able to do one because of their changing in balance, and two, they’ve got all this belly out in front of them. So they might become a little more dependent in their third trimester, so we put them in therapies to work on balance. How are you going to transfer?—if they could do a lateral transfer without a sliding board before, they might need a sliding board during pregnancy. So a lot of times I’ll put them in therapy to practice that kind of stuff. They can put a ball down their shirt so they can’t lean forward, they can do a number of things. Other things to think about are fatigue; they’re going to tire more. We all know that a woman who’s pregnant has so much pressure on her bladder it feels like her bladder is about as big as a marble—not different for women with spinal cord injuries. So women who are doing intermittent cath, it’s really a pain to do intermittent cath every hour and a half, like a pregnant woman to go to the bathroom. So they may have to have an indwelling catheter in for the final few weeks. So those are some of the issues. The other thing to consider is maybe renting a power chair for the final weeks of pregnancy so there’s increased mobility, and then if you can rent it a few weeks after the baby is born, it’s also increased mobility. So there’s a lot of those kinds of issues. Now as far as weight gain and the chair, generally you can adapt that, you know, take off the side rests or something like that. But there’s definitely a change in center of gravity, there’s definitely a change of balance, and for a lot of women, there’s a change in level of independence.
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Kim Eberhardt Muir, MS Program Specialist, Spinal Cord Injury Program, Shirley Ryan AbilityLab (Formally the Rehabilitation Institute of Chicago) https://facingdisability.com/expert/kim-eberhardt-muir-ms If you can, have an idea, or have a dry run, I call them. We do airport trips a lot of times for patients, and I’m talking about the airport, you can travel in many ways, but airport seems to be the one I get the most questions about. If you can kind of put your mind at ease, and see what it would be like from the terminal, all the way up to where you’re going to get on the plane. I say right from the ticket counter, all the way up. As far as bathrooms—knowing about your bowl and bladder before you go on that flight, and how long it’s going to be, and preparing accordingly. Are you going to make a 4-6 hour flight, and what is your bladder care schedule with that? Knowing about things like sitting for too long a time, how you’re going to do your pressure reliefs when you’re on that airplane. Those are great things to talk to your therapist about, and also in support groups. Traveling by car or train, very similar things--thinking about your skin, thinking about the distance of the trip, how long before you’ll have a break using an accessible restroom if that’s going to be available. Those are all things to think about.
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hDiane M. Rowles, MS, NP Nurse Practitioner, Shirley Ryan AbilityLab (Formally the Rehabilitation Institute of Chicago) https://facingdisability.com/expert/diane-m-rowles-ms-np Autonomic dysreflexia is a medical response to an autonomic imbalance in the spinal cord nervous system. Well people who have injuries above T-6, it’s very important to know the difference between autonomic dysreflexia and preeclampsia, because they both have the same symptoms, but the treatment is very different. For autonomic dysreflexia, we want to treat the dysreflexia and maintain the pregnancy till the end. Preeclampsia, there’s risk to the child and there’s going to be a tendency to deliver the baby. But if you show up in an emergency room, the symptoms are very close to the same, so it’s important for somebody to know that they have a risk of dysreflexia. I have known women who have very high injuries who have had a problem with dysreflexia, even not being pregnant, who’ve been in the hospital the last month just for monitoring, but I have to say, that’s probably not the majority.
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David Chen, MD Medical Director, Spinal Cord Injury Rehabilitation Program, Shirley Ryan AbilityLab (Formally the Rehabilitation Institute of Chicago) https://facingdisability.com/expert/david-chen-md When we think about spinal cord injuries, we most commonly think about a traumatic injury—someone who has been either in an auto crash, has had a fall or perhaps a victim of an act of violence. And in all these different instances, what has happened is a tremendous amount of energy has been transmitted to the body, which is also felt by the spine and the spinal cord. So what happen is, the spinal cord is injured—like a bruising injury. That’s the most common type of spinal cord injury. If I were to go up to an individual and give him in a punch in the arm—if I hit him hard enough, they would see a bruise on their arm. Similarly, a person who has had a spinal cord injury, it’s as if their spinal cord, that structure, has taken a punch. What happens, like any part of the body that sustains that type of injury, is they develop a small amount of bleeding and bruising. And that bleeding and bruising, in addition to the swelling that occurs after an injury, can cause the nerves not to function normally, and block the signals to and from the body. That is a spinal cord injury.
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Diane M. Rowles, MS, NP Nurse Practitioner, Shirley Ryan AbilityLab (Formally the Rehabilitation Institute of Chicago) https://facingdisability.com/expert/diane-m-rowles-ms-np Okay, so for women who are starting to have their menses return, or don’t miss a menses, cause some don’t miss a menses, many times pads will be used early on in the hospital because their easier, they’re quicker, they’re non-invasive. If a woman has decreased hand function, she may or may not be able to put the tampon in by herself. That doesn’t mean that she can’t use tampons, it just means we have to find somebody who is willing to put it in and change it for her. I’ve taught many significant others, many a parent how to do that, and it’s a fine option. Some women chose to use pads until they get to know their body a little bit better, they get used to their body a little bit. But the thing, the important thing for them to know is if they want to go back to using tampons, they should, and they can and there’s not a harm. I do ask them to change them a little bit more frequently, because if the woman has altered sensation in the genital area, if it was to become over-filled, or if there’s a problem with placement, they could have a medical condition called dysreflexia from it causing discomfort down there. So I do ask them to change it a little more frequently than maybe they would have if they didn’t have a spinal cord injury, and that’s due to lack of sensation and potential complications of the lack of sensation. But many times they’re catheterizing anyway, so changing a pad when they’re doing a catheterization is pretty easy. So for women who wear a catheter, an indwelling catheter, they have a catheter in all the time, the tampon goes in a different hole, so it’s absolutely not a problem, it can still be used. Just the person, if they can’t put it in and take it out themselves, they have to trust the the person is going to do it correctly and safely.
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Diane M. Rowles, MS, NP Nurse Practitioner, Shirley Ryan AbilityLab (Formally the Rehabilitation Institute of Chicago) https://facingdisability.com/expert/diane-m-rowles-ms-np So, let’s talk about spasticity a little bit. As far as positioning, spasticity can help with position, or it can hinder with position. If the spasticity is so bad that you can’t get into position, your partner can’t get near you, then obviously you want to make sure that you’re having intercourse when your anti-spasticity medications are working the best. The thing to remember is, if you’re counting, if you’re a male, counting on a reflex erection, and you’re taking your anti-spasticity medications, the anti-spasticity medications are likely going to give you less of an erection. That’s when we add in some of the other things to help with erections, whether it’s the oral medications, or the pump, or the injections or whatever. If you count on a good reflex erection, spasms aren’t so bad, then I really recommend people have intercourse when their anti-spasticity medication is wearing off, so that their reflexes are the strongest to help with the erection. For women and spasms, again it’s the adduction spasms usually that are the problem. If a person doesn’t have real severe spasms, spasms can be helpful in positioning, can be helpful in movement, it can be helpful in stimulating the partner, because there’s a better squeeze. So spasms can be helpful, or they can be a hindrance.
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Diane M. Rowles, MS, NP Nurse Practitioner, Shirley Ryan AbilityLab (Formally the Rehabilitation Institute of Chicago) https://facingdisability.com/expert/diane-m-rowles-ms-np So alternatives to genital sex, or additions to genital sex. There is oral sex, which is perfectly acceptable and it’s definitely a partners’ choice, but there’s nothing unsafe about it, and it’s defiantly described to me by my patients as being very pleasurable. The other things are the use of sex toys. Again, I just ask people to think about the safety of the sex toys, especially to the insensate areas—is it going to cause a pressure sore?—is it going to cause other problems? –but sex toys often enhance the enjoyment of the person with the spinal cord injury, as well as the person, as well as the partner. And then the other thing is for people who don’t get great erections, medications can be expensive, alternative things to help with erections can be expensive. You don’t have to have a great erection to have intercourse. There’s a thing that’s called the stuffing method, where you use the softer penis, and just kind of stuff it in, may prop the hips, help with some pelvic tilt. But, usually the partner has to work a little harder to be stimulated in that case, but many people find that very successful.
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Injured in 1995 at age 18, Paraplegic https://facingdisability.com/video-interviews/megan For Families Facing Spinal Cord Injuries I had a boyfriend at the time, that didn’t last very long. We broke up a month after I got back to school, and so, so that was then, I was like; no one’s going to love me anymore because obviously, he couldn’t. You know, for a while it was, really threw me for a loop, and I didn’t know how to be. And I think that that’s a hard thing you have to learn, you know, and I think a lot of people go through that when they’re younger. I think eventually you have to be comfortable with yourself, and confident in yourself and be comfortable with your disability and how it affects you for anyone else to be—and that’s friends but it’s much more important with intimate partners is that if you’re comfortable with yourself, then they can be too.
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Katie Powell, OT Occupational Therapist Clement J. Zablocki VA Medical Center, Milwaukee https://facingdisability.com/expert/katie-powell-ot The changes in bowel and bladder after a spinal cord injury are often what people say are the most life-changing aspect of a spinal cord injury. Sometimes one of the resulting symptoms is that you lose control over being able to manage your bowel and bladder independently. So somebody may need other agents to help them manage their bowel and bladder. For example, they may be put on a medication that controls their bladder, so they just don’t void unexpectedly. They may be put on medications for bowels, so that their stool is softened and comes out at a consistency that is formed and not loose or too hard. Generally people are put on certain programs, such as a bowel or a bladder program, to help them regulate their bowel and bladder. If someone isn’t able to void or urinate independently, then we look at a catheterization program. There are all sorts of different types of catheters that are inserted into the bladder to allow the urine to come out. There are some that stay in the person at all times so the urine can just flow out into a bag that can then be emptied. There are people who do what’s called intermittent catheterization, where they insert a catheter into their bladder when it’s time to go to the bathroom to help it empty. In terms of bowel management, generally as a healthcare team when the person is with us on their rehab stay, we work on getting a regimented bowel program going, where the bowel is trained to go at the same time every day. So we look at does that person need a suppository, or an enema or an oral medication to help get the bowel trained to do that? Then once we have those aspects taken care of, then as an occupational therapist I’m working with generally the nurse to see if that person can manage this bowel and bladder routine by themselves, or if they’ll need help from a caregiver to do so. And so, in terms of bladder management, I’m looking at does somebody have the fine motor control or hand movement to insert a catheter? Are they able to have what’s called a “sterile technique”? We make sure that they use a clean process so they’re not at higher risk for a bladder infection? In terms of a bowel program, I’m looking at -- does the person have a bowel chair, or a safe commode surface to sit on like a bathing chair, it’s a surface that’s padded that protects their skin, it’s a surface that allows them access to their bottom so that they can do the clean-up care afterwards. Can they access the buttocks to be able to insert an enema or suppository? And in some cases, sometimes after a spinal cord injury, someone may need what’s called “digital stimulation” of the bowel in order to get the bowel to excrete. Is a person able to do that stimulation themselves? Do they need a piece equipment to do so?
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T. George Hornby, PhD, PT Research Scientist, Sensory Motor Performance Program, Shirley Ryan AbilityLab (Formally the Rehabilitation Institute of Chicago) https://facingdisability.com/expert/t-george-hornby-phd-pt Sometimes spasticity can be confused with voluntary movement. Sometimes people actually use their spasms when they actually do tasks. Spasms are reflexes, like you go to a doctor and the doctor taps on your tendon, that’s a reflex, we all have that. Patients with spinal cord injury often times have exaggerated reflex, so I tap on their tendon, and their leg goes kicking up really high. We need those reflexes to walk. Intact people utilize those reflexes to walk, spinal cord injured individuals actually use these reflexes, often times, to walk. So it’s really important that, it’ nice to know they’re there. If you don’t have them, that tends to be a negative sign for recovery walking.
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Kim Eberhardt Muir, MS Program Specialist, Spinal Cord Injury Program, Shirley Ryan AbilityLab (Formally the Rehabilitation Institute of Chicago) https://facingdisability.com/expert/kim-eberhardt-muir-ms The basics we tell our patients when they first go home, is that you need to be able to get in your house safely. If you can have two accessible entrances, even better in an emergency. So a ramp or lift is usually what we’re talking about, or an elevator for some people that want to go more than one floor. After that, the bathroom, and where you’re going to sleep. Now, a lot people, the second floor, they can’t sleep on the second floor. So, you have to find another room to be accessible, whether it be a den, another person’s room, a living room. And, I tell people that’s where you’re going to be for a while; make that look like your bedroom, you know, it’s not just a temporary place. You need to organize it, and look at it as your bedroom, and create that environment that you want for sleeping, and doing some of your self care. The bathroom is next, and usually that entails a barrier free, or roll-in shower. Or, a tub bench in a bathtub, which is not going to require as much, as far as modifications, but may require things like grab bars, and a hand-held shower.
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Diane M. Rowles, MS, NP Nurse Practitioner, Shirley Ryan AbilityLab (Formally the Rehabilitation Institute of Chicago) https://facingdisability.com/expert/diane-m-rowles-ms-np Very defiantly, both. They both have different issues, though. Okay, for women their sexual response cycle, meaning the ability to get pregnant, the ability to ovulate, the ability to have menses is not interrupted by their spinal cord injury. But their sensation is possibly interrupted by spinal cord injury, which will make it very different for them, and also the possibility of lubrication will be interrupted due to their spinal cord injury. For men, unfortunately, it’s more complicated, because men after a spinal cord injury may have both erectile dysfunction, as well as ejaculatory dysfunction. And, they also have the sensation altered after spinal cord injury many times.
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Diane M. Rowles, MS, NP Nurse Practitioner, Shirley Ryan AbilityLab (Formally the Rehabilitation Institute of Chicago) https://facingdisability.com/expert/diane-m-rowles-ms-np There’s a number of things to talk about with patients in regards to this. And one is generally when someone is wrapped up with a new injury, and they’re hospitalized and health care providers are saying, “Somebody’s got to learn your care,” we always think of the significant other to be the caregiver. And I always tell my patients, “you know, it’s important that your significant other knows the care, because what if your caregiver doesn’t show up?” Or, I always tell people, “what if you want to go to Australia for four-months, and you don’t want to take a caregiver, you know, an extra airplane bill, pay for another hotel room and everything because of the cost.” So, it’s important that a significant other knows how to do the care. But it doesn’t have to be the significant other that is the primary caregiver. Like we talked about, relationships are tough enough, and sometimes it’s very hard to be the caregiver and the lover. So generally, I talk with patients, and if they want me to, their significant other, and we talk about their decision as a partner set—is the caregiver and lover role combined going to work here or is it not? And if it’s going to be a big challenge, then we need to find somebody else to help do the care. A lot of that is going to depend on finances, it’s going to depend on availability of someone else, but generally you can find someone else to come in and do the care. When I talk to a lot of my patients and their significant others, some will say, “we would rather spend the money having somebody come into do the bowel routine, do the shower, so we can focus on being lovers.” Other people say, “You know, doing the care doesn’t really bother me, we’d rather spend that money going out to dinner, or having two vacations a year.” So, it really comes down to the partner set.
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Injured in 1978 at age 11, Paraplegic https://facingdisability.com/video-interviews/jorge FacingDisability.com – For Families Facing Spinal Cord Injury To be accepted by my son as “normal dad,” “cool dad,” I want to be “cool dad.” And, I didn’t know—oh my God, I was scared, I was like, will he grow up and be embarrassed of me, or be ashamed of me, you know? I know that I grew up being embarrassed and ashamed of myself, so I wonder if my son going to feel the same thing about his dad. So those things kind of scared me, and, it was awesome—I mean, kids just pick up on, on parent’s confidence and if dad feels good, then son is going to feel good too.
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Diane M. Rowles, MS, NP Nurse Practitioner, Shirley Ryan AbilityLab (Formally the Rehabilitation Institute of Chicago) https://facingdisability.com/expert/diane-m-rowles-ms-np The ideas that appear to get in the way for women, or some of the repeated themes that I’ve heard over the years, are a lot of self image—“How can I take care of others?”—“How can I be loved?” And, the other things are, again, “If I don’t have normal sensation, how is that going to work?”—“How can I do this?” For women you know, when they hear, “Yes, you can have a baby,” and “Yes, you can be a mom.” Just like for men, “I can have a baby, I can be a father,” that’s all very exciting and rewarding. And like I said, their sexual response cycle isn’t necessarily interrupted, so they can do all of those roles. So it more comes down to a self-image issue for women—fear of abuse, fear of being taken advantage of— but I have to say that those issues are also dealt with by men. So, it’s a lot of those kind of issues for women, as well as health maintenance issues. You know, “How do I get a mammogram when I’m in a sitting position?”-- “How do I go to a gynecologist when I’m in a sitting position?—“How do those issues…what’s going to happen with my…?”—“Do I have to use pads?”—“Can I use tampons?”—“If I do get pregnant, how does the pregnancy happen?”—“ How do I push?” Those kind of issues.
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