Bonus Mini Episode: Spinal Cord Injury

[music] Welcome to a bonus mini episode of Medical Rehab Matters. I'm co-host Patricia Sullivan, Director of Communications for AMRPA. Earlier in this series, my co-host, Dr. Robert Kruegeni, spoke with three physicians about spinal cord injury. Today, we're sharing our conversation with Margie Williams, a rehabilitation nurse who has extensive experience with spinal cord injury. She's currently on the adjunct nursing faculty at Bernal University in Norcross, Georgia, and she's an active member of the Association of Rehabilitation Nurses. [music] So, Margie, can you tell us a little bit about yourself and your background in this area? Well, I've been a rehabilitation nurse for almost the 40 years that I've been nursing. I worked 10 years at Shepherd Spinal Center in Atlanta, Georgia on the inpatient rehabilitation unit. And then I worked 27 years at Children's Healthcare of Atlanta, again, on an inpatient rehabilitation unit only this time. It was not just spinal cord, it was other neurological injuries, and it was pediatrics. I've worked some in the community with people with cognitive impairments, but I'm also an inventor of a mobility device to help children with spinal bifida, which really is callica, as a form of spinal cord dysfunction. That's interesting. So, when you and I talked previously, we talked a little bit about how the rehabilitation nurses role is overarching to all the therapists and other kind of care that patients in an inpatient unit or hospital would receive. So what's the nurses role, the rehab nurses role? The role of a rehab nurse in patient rehab, you could almost go into long discussion of each one of these. But I said patient family education. They're cheerleaders, we're members of the interdisciplinary team, we're patient and family and also there be advocates, we're coaches, and we monitor the effectiveness of the rehabilitation program such as effectiveness of medications, file programs, of bladder programs, and of skin, because skin problems is always a big risk. Those were there 24/7, there's always a nurse taking care of a patient, so it gives us a unique opportunity to give that day long observation of the patient. How do rehab nurses work with the families of patients? Again, some of these roles we interact not only with the patient, but with the family. First of all, the patient and then that would include their family are the head of the rehabilitation team. They need never to forget that. So they're involved from the very beginning. Usually we have a team meeting with the family within the first few days of admission to the unit. So they're involved from the beginning in goal setting. Family members often attend therapies, we try to encourage that, because not only do they see the progress that their family member is making, but it helps them to better understand the challenges and therapists and nurses have the ability to model how to deal with certain the challenges related to the injuries. And then it also, their involvement gets them an opportunity to learn the skills that they will need after discharge. What's different about in patient rehab? I always say that if a child has a broken arm, remember I'm mainly peed, they come in, the arm gets fixed and they may have some challenges for a little while, but they basically go back to life as it's always been. But when a patient is in rehab, they're going to have long term special spinal cord injury. Some very serious long term challenges from mild, even more severe. So family's important part of rehabilitation, because they need to learn the skills to care for their family members at home. You have the situation of someone that's very high level injury. Family members need to know the care because even if nurses come in, not all nurses are trained the same and they need to be able to monitor the care. And sometimes actually help the home health nurses to understand the special needs of their family members. And we need to remember that bringing a patient with a spinal cord injury home is very disruptive to the family unit and to their lifestyle. Getting back to like my background is pediatrics. Parents say, why do I need to learn to do such and such? And they are not going to need to do this after discharge. Well, yes, they probably are. You just don't know it yet. But what I tell them is your child knows your voice, your touch, your scent. That's comforting to them because we're strangers. And over the years when families involved, the patients actually tend to do better. But you can have a family with an attitude is very, very important. Are they going to do all my poor disabled child? They have a spinal cord injury. They're never going to be able to do anything or amount to anything versus a positive can-do attitude. And one thing I've noticed is that when parents are divorced and they're arguing in the presence of the child and there's lots of anger or if there's a history, a parent-child conflict, then these children tend not to do well and rehab. And I think a lot of it is the same with the adult and the family situations. The family dynamics 100% affects the ability of someone to recover. I would think that even with adults, that it would be quite a strain on a relationship or on the family dynamics to have someone with a spinal cord injury. If I could just chime in here, I'm a huge believer in the value of rehabilitation nurse and role that they play in patient rehabilitation in general. But I think no more so is that more evident than with the spinal cord patient in my opinion. There's many things that can go wrong and can result in your kidneys failing and urinary tract infections and as I said, skin breakdown. So having a rehab nurse who can work with the patient and the caregivers, education, education, practice, practice, trial and error, for all of those reasons around the clock, is so critically important to ensuring that they're going to be able to go home and be successful and not be bouncing back to the hospital. I think that what you're saying here, Bob and Margie, kind of points to the importance of being in a hospital setting rather than sniff a skilled nursing or other post-titude care facility after the initial injury or hospitalization and acute care hospital because of the complexity of the medical issues that could arise. Yeah, I would say it's not just the complexity and understanding a spinal cord patient, but also it's the actual burden of care because in a rehab hospital setting, right, the nursing to patient ratio is similar to being in an acute care hospital. Whereas if you go to a skilled nursing facility in today's world, it can be 15, 20 to 1 and it's just not possible to provide the necessary care. And as part of the nurses' role, you kind of reinforced what the patients are learning in their therapy sessions with the occupational or physical therapists, moving themselves the way they've been taught, making sure they're doing that, is that part of the nurses' role? Oh, 100% because the patients want to get out, when therapy is over, especially pediatrics, they want to be up and around and they want to go and do things. And so they get to practice the transfers, we get to practice skin checks, I would say, do a skin check, we wake up in the morning to make sure nothing happened at night and do another one when you go to bed to make sure nothing develops while you're in a wheelchair. We do with the splits on and off. There's more than once we have to go back to a therapist, they've developed a new split for the patient and we take it off. Oh, there's a red spot and it's not lunchable. So we need to know what to do in the protocols of who to notify that. So we provide a lot of feedback. Can you comment on the nurses' role in terms of the psychological adjustment for both the patient and certainly the family, the caregiver? Because as you alluded to, there's a lot of adjustment that needs to happen. I'm just curious how you approach that in your day-to-day work. One of the things is the very act of admission to rehabilitation. The very fact they're on the unit as a big psychological boost. Over the years, many of these patients, families have been told, "Your patient is not going to live," for example, especially if they're a higher level injury. They're getting this devastating news that they've been called in the middle of the night and they are having to respond. I heard of just recently how to go to the hospital. because a family member was shot and that's another way the spinal cord injury can occur. And so she's having to deal with all that, the versus on a ventilator. So the very fact that they're out of ICU and moving to the floor, moving to rehab, that's always seen as a positive sign, maybe part of our initial evaluation that we're giving them hope. And that's the bottom line that our whole floor is, we're building on hope. You have patients walking down the hall and you have staff and nurses cheering. We have activities like dances and where the patients get to move and to music, etc. So we try to, especially in pediatrics, make therapy a way of play because member play is child's work anyway. So we try to make a lot of the things fun for them. We actually have therapy dogs that come around, imagine someone that's learning to use a wheelchair and they have the dogs leash attached to the wheelchair. So basically is like they're walking the dog down the hallway. So basically trying to bring that hope, things are going to be different, but you're still going to have a life, you still can do things. I would think that that is a really important message for anybody of any age who suffered spinal cord injury to know that they have hope that they can still live a good life. Well that was the thing is that was big in my research that the parents with this device is like these infants now, they're going to be canned dude, they're going to go to college, they're going to live on their own, they're going to get married, etc. versus the others that didn't have this hope. Oh, what's going to become of my poor child when I'm old and I can't or deceased and I can't take care of them anymore, they're totally dependent. Is that whole different mindset that hope gives them? And the techniques that we use in therapy provide alternative ways for them to do things that they used to do, like we will share sports for example. So they can still participate in the sports they love just in a different way. And that gives them a way not only of hope but seeing how they can have life after a spinal cord injury. We spoke to somebody in one of our recent episodes who was an amputee, we talked about learning how she used to do downhill skiing, she didn't like it, so now she's doing snowboarding and we spoke to someone else who is a quadplegic who was injured about 25 years ago who talked about scaling pike's peak with a system for wheelchair. So I think that those stories are really important and interesting to hear too. Well, I give you a very simple one that we deal a lot with inpatient rehab is positioning of the feet, we might have serial casting, etc. Because you want to have feet in the functional positioning. Number one, so they don't slip off the foot plates of a wheelchair. Sure. But also you want to be able to wear pretty shoes, wear red or shoes. Shoes protect the feet. And actually I went to a conference. There was a woman with a spinal cord injury that was wearing heels that the heels were probably about four or five inches high, which you could never walk in them, but she said, but I can wear them because I can use them in a wheelchair. Because she's no longer in it, yeah. That means I'm not doing this. She can wear the pretty shoes she wants. It doesn't make any difference. We also mentioned in a prior episode concerning assistive technology that, you know, the ability to control your environment now, whether it's shutting your lights on and off, right? Your television, changing the channel, surfing the internet, dictating a memo, that can all be done now without needing to use, you know, your arms at all. Again, what someone can accomplish and the quality of life that someone can have now compared to, you know, just even 10, 20 years ago, tremendously different. Right. And to me, the most important technology is the assistive animals because they do so much. And to add to that, you can actually open up your door using assistive technology, which is important for people to come and go. It's a provide safety. Hi, well, this has been great. I really appreciate you giving us your time and coming on. This episode is brought to you by Morris Therapeutics, part of the Morris Group, a privately held family-owned company. Morris Therapeutics is committed to approving the lives of patients who suffer from movement disorders, spasticity, and neurological conditions. Focusing and advancing neuro-modulator technology, Morris Therapeutics offers Xiamen, a uniquely purified therapy that's FDA approved for six therapeutic indications in the United States. Please note that Xiamen has a boxed warning and could result in potentially serious life-threatening side effects. Visit xiamen.com for important safety information and focus-grabbing information, including a boxed warning. Thanks for listening to Medical Rehat Matters, a podcast by the American Medical Rehabilitation Providers Association. AMRPA would like to thank podcast sponsor verse therapeutic for each support, as well as their Gold and Platinum Association sponsors. Our Platinum sponsors are Biones, Casa Kalina Hospital and Centers for Healthcare, and Select Medical. Our Gold Sponsors are Surnur, JFK Johnson Rehabilitation Institute, plus Rehat in the Center for Improvement and Healthcare Quality. You can learn more about Medical Rehabilitation at AMRPA.org.