Speaker A [00:00:00]:
Hi, everyone. So today I have a very special guest. Lauren Harmisen is a registered nurse and the CEO of Camp Possibility. Today we’re going to go a little bit away from nutrition, and we’re going to be talking more about medical issues that people with paralysis and specifically spinal cord injury deal with. Welcome to the Paralysis Nutrition Podcast, where changing your eating habits is the key to losing weight, improving bowel health, and feeling your best. I’m your host, Fatima Fakouri. I’m a registered dietitian who’s married to a quadriplegic and specializes in nutrition for paralysis. Get ready to be inspired, educated, and motivated so you can take control of your health using the power of food.
Speaker A [00:00:42]:
Let’s get started. This is the Paralysis Nutrition Podcast. Lauren, welcome to the Paralysis Nutrition Podcast.
Speaker B [00:00:51]:
Thank you.
Speaker A [00:00:52]:
So, Lauren, tell us a little bit about. I mean, how are you now on Instagram? You are the SCI nurse. Yes, yes. And so how did you get interested in spinal cord injury? Everyone knows for me, my husband’s quadriplegic. Right. And I’m a dietitian, so nutrition paralysis makes sense. So for you, you’re a registered nurse. How did you get into this area?
Speaker B [00:01:17]:
Yes. So I have done things with people with disabilities for pretty much my entire life. When I was getting ready to go to nursing school, someone in our community actually had a spinal cord injury. And I ended up helping his family get everything read for him to come home. So it was basically a spur the moment thing. I read articles in the newspaper and things like that. And I called him at rehab and said, I know this is a lot. I feel like I’m supposed to help you, but I don’t know why.
Speaker B [00:01:47]:
What am I? What do you need help with? And so I ended up helping his family get everything ready for him to come back to our town. So I helped with paperwork, and I helped get bus things ready and stuff ready for school. Basically every adapted thing that needed done, I helped. So I did that all while going into nursing school. So that kind of set the tone for me as I went into nursing school and chose different projects to write about and extra things like that. And I started using spinal cord injury as my topic for a lot of things I then started doing. I volunteered at a camp in Missouri called Camp Barnabas for people that have different types of disabilities. And I thought that it would be great if my friend that had a spinal cord injury could go to something like this.
Speaker B [00:02:27]:
But the camp really was not designed for somebody like him. So the adult camps much more served people that had cognitive Delays and other issues. And so someone that had traumatic spinal cord injury and that was his main disability really didn’t fit somewhere like that. So I like to do crazy things. And I started a nonprofit for people that have disabilities. And initially, we did people that had high cognitive function and a physical disability and needed a wheelchair. And then over time, we’ve transitioned it to having all campers that have spinal cord injury. So I’ve done a lot of research about spinal cord injuries.
Speaker B [00:03:05]:
Anytime that I’m able to select what I study in school, I choose topics that are spinal cord injury related. I now have done medical consulting for people that have spinal cord injuries. I oversee our entire med team. So I train physical therapists, occupational therapists, physicians, nurses. How did you care for people that have spinal cord injuries? So, pretty much spinal cord injuries is what I do pretty much every day. In some aspects, I talk to somebody who’s the quad every single day. Right. So between our camp and then we develop friendships with over the years.
Speaker B [00:03:40]:
So spinal cord injury has just become a part of what I do, and I love doing it. I think it meets a big need. There are a lot of people that have spinal cord injuries but aren’t getting medical care that they need. And so it is my goal to learn as much as I can so I can be a good advocate. And then also, as I am developing and going to school to. To become a nurse practitioner, I’ll be able to meet those needs in that way, too.
Speaker A [00:04:01]:
Love that. It’s interesting because when I met my husband, I was a graduate student, and so, of course, I was like, oh, I’ll do my next whatever assignment on spinal cord injury. And I remember that there were like, there’s no chapter about spinal cord injury in the nutrition textbook, you know, no, there’s really no information out there. So with nursing, do you feel like. I mean, you are a registered nurse. I know you’re studying to become a nurse practitioner.
Speaker B [00:04:31]:
Right.
Speaker A [00:04:32]:
Go to the next level. But as a registered nurse, and you can be honest. Did you get training and education for spinal cord injury?
Speaker B [00:04:42]:
I would say in general, we got about four slides of information about spinal cord injury when we were in nursing school.
Speaker A [00:04:47]:
That’s more than I got.
Speaker B [00:04:50]:
We learned if a patient comes to the ER and they had autonomic dysreflexia, what the main things are to look for. And that was pretty much the extent. So pretty much everything I’ve learned is based on working with people that have spinal cord injuries, doing a ton of research. There is research out there, but I Feel like you really have to look for it. And so writing all those research papers that I have to do for school, but basing all of them on spinal cord injuries has helped me learn a lot. Basically, all of my classes for NP school learn about spinal cord injury because I train them all about it when I have to. They have to read all my discussions that I write.
Speaker A [00:05:26]:
So that’s awesome because I feel like so many people in my program complain or comment on how little their doctors and nurses know about spinal cord injury. Now, we live in New York. We have access to a lot of different specialists, just maybe within an hour, hour and a half. There’s physiatrists, there are special neurologists, there are special spinal cord injury urologists. We have so much access here. But if you don’t live someplace, and I should also mention the ability to afford to do these things, we need regular old practitioners out there to know what to do. When you get somebody with spinal cord injury, you’re teaching your peers about that.
Speaker B [00:06:17]:
Is one of the goals that I have long term with my career too, is helping more people be able to understand the needs of people with spinal cord injuries. How do we treat them? What do we look for? I think even the doctors that we have that come and volunteer at Camp Hostility have said that I’ve taught them more than they learned in med school. Wow.
Speaker A [00:06:34]:
Yeah.
Speaker B [00:06:34]:
So there definitely is not a lot of teaching about spinal cord injury unless you specialize in that area, unless you live in a big city where you have access to those doctors that are specialists. There are very few people that have that experience. So I think that it’s definitely important both for patients and people with spinal cord injuries to know how to advocate for themselves and be able to explain their needs to their healthcare providers. And then on the other end of it, healthcare providers also need to understand spinal cord injury and what needs these patients are going to have. And one of the biggest things I’ve noticed that people have to look at that’s much different is every person with spinal cord injury, their needs are not going to look exactly the same. So people needs are not necessarily textbook. So anything I teach about spinal cord injury involves learning about individual patients and how things look for them and not just thinking, oh, this is a textbook answer, because a lot of it isn’t right.
Speaker A [00:07:30]:
Yeah, that’s so true. I have people in my program who are quads, but they present as paras. I have people who, you know, because of the rehab that they got and because of their personal kind of attitude, who are quads are much more independent than paraplegics who perhaps didn’t get that type of rehab. So it’s really interesting, you know, some of these, I don’t know what you even call it. Some of these things that we assume, like, oh, if you’re quad, you must use a power chair. It’s like, my husband has never used a power chair in his life. And then you get pairs. It’s like, oh, you must be able to just do everything on your own except walk.
Speaker A [00:08:13]:
And it’s like, no, that’s not true. You know, and then also, and this is really what I want to talk to you about today, there are a league of other health complications that come up with spinal cord injury that have absolutely nothing to do with the ability to walk.
Speaker B [00:08:31]:
Yes.
Speaker A [00:08:31]:
So, you know, and I am going to say the top things now. I did ask around, you know, I asked on Instagram, I asked on Facebook, I asked my group program members. I’m having Lauren, she’s an STI nurse, she’s coming on the podcast. What do you want to ask her?
Speaker B [00:08:48]:
Now?
Speaker A [00:08:48]:
Of course, I had a million questions, but the most popular things were, in no particular order, UTIs, skin and pressure sores, bowels, and I want to add blood pressure and renal disease to that list. So let’s start with the most. I said in no particular order. But really, UTIs were the number one thing and no, of course they’re the number one thing because they’re probably the most annoying, recurrent, bothersome thing that can get really serious real quick. Right? Yes, people do feel helpless because they get recurrent UTIs. So as a dietitian, I get the question all the time, what can I eat, you know, to make my. To not get as many UTIs. And I always say there is no magical food that’s going to prevent you from getting UTIs.
Speaker A [00:09:43]:
You need to cath more frequently. You need to drink enough water, you know. And I do recommend a couple of supplements like the D Mannose. There’s good research on that. And I mean at this point it’s kind of like an old wives tale. The cranberry thing, right, the cranberry extract. But I will say there’s that one, it’s called Allura and it’s super, super high PACs. So I do recommend that one because I feel like we got to do whatever we can to combat these UTIs.
Speaker A [00:10:13]:
And if it works, it works. But when it comes to UTIs, what do you want people to know as a nurse, what can they do to Help prevent them. And what should they do once they know they have one or they suspect?
Speaker B [00:10:26]:
I think the biggest thing always is making sure that people consult with the urologist. A lot of times that doesn’t has never come into play or people haven’t even thought about that. Just because if you’re having UTIs on a really regular basis, you need to figure out what the causes for that. One of the other things that happens a lot of times that people don’t realize is that in general people want to do like a take home test for a uti, which might work for people that don’t have spinal cord injury. But if you have a spinal cord injury, most of the time your tests are going to come back and say that you have a uti.
Speaker A [00:11:01]:
Because there’s always bacteria every time.
Speaker B [00:11:05]:
Yeah, a lot of people that cath or have an indwelling catheter like a suprapubic are going to have uti. In general, your body doesn’t like having things inserted in it and so you’re going to develop bacteria on those things. So there are a couple different things that we recommend they do. For one, if you do develop symptoms, which would be like a fever or you start all of a sudden having to pee a lot more often, you definitely want to make sure that then you see your healthcare provider and get treatment for that. But don’t try the take home test because they will pretty much all just show that you’re symptomatic. You always want to check for fever, check if your urine gets super dark, you can increase your fluids quite a bit. I helped somebody a couple weeks ago that was having uti, so we got him on antibiotics and then just do lots and lots of fluids in order to flush everything out. And that really helped.
Speaker B [00:11:55]:
In a few days he was really starting to feel a lot better. So even if you feel like you’re having a lot more urgency or pain a lot more, it’s definitely still better to make sure that you get a lot of fluids and flush it out. And that doesn’t mean juice and things that have high sugar content.
Speaker A [00:12:09]:
Water, water act just water. So I always, yeah, I every day I feel like I’m telling people at least two liters of water. And when I say at least, I mean at least at least. And if you’re 180 pounds or 200 pounds, three liters, you know, maybe even in excess of that if you have a uti. So me personally, I go for two liters. I try to make my husband get three we of course don’t know how much he weighs because we don’t have a wheelchair scale. But most people need more than that. Right.
Speaker A [00:12:44]:
And the fluids also play a role in constipation. We’re going to talk about that. Yeah, we’re going to talk about that. But with the UTIs. First of all, Lauren, I didn’t even know there was a take home test for UTIs. But again, you work with so many people in terms of the medical side. I work with so many people, but I don’t know about how they’re testing. Maybe I should ask now.
Speaker A [00:13:08]:
But yeah, people will come on to my coaching calls and say, clients of mine say, oh, I have a uti and we’ll talk about probiotic foods and fluids and things like that. But I actually never knew that you could test for UTI at home because we always just go in and get the culture. Right, we go and get the culture because. And you can elaborate on this depending on the type of bacteria that is there, you need a different type of antibiotic.
Speaker B [00:13:37]:
Yes. So that’s one of the reasons that it’s really important to make sure that you see your healthcare provider if you’re having recurrent UTIs, because they need to figure out what bacteria it is that you have. And sometimes if you’re not going to someone that’s a specialist, they’re not going to necessarily be looking for that and they’ll just keep giving you the same thing over and over.
Speaker A [00:13:54]:
Exactly.
Speaker B [00:13:55]:
It’s really important that you get those cultures so that you can get those treated. The other thing definitely is make sure that you reduce your sugar intake, which a lot of people don’t do at all. But sugar is just going to breed those yeast and bacteria. So decreasing your sugar and increasing your probiotics. Yes, definitely is good for all of that too.
Speaker A [00:14:13]:
And so if you are listening and you do not have a urologist, what should you do?
Speaker B [00:14:19]:
You should definitely look for one that has spinal cord injury experience if possible. And if not just in general, it would be better if you see even a general urologist and tell them about the issues that you have going on. Because urologists in general are still, even if they maybe don’t have the spinal cord background, they’re still going to have a lot more background in catheters and UTIs and things like that. And many, many UTIs can end up leading to scarring and other things. So you really want to make sure that you get those treated.
Speaker A [00:14:47]:
Yes. And UTIs, when left untreated or when people try to treat them with things like apple cider vinegar or whatever it is that the Internet told them to do, you can end up septic.
Speaker B [00:15:01]:
Yes. So it is very important. That’s another reason fever can sometimes be one of the first signs of going septic. So it’s really important that you get quick treatment as soon as you start developing those UTIs. If for some reason you can’t get into a urologist, that’s one of those things that you definitely should go into the emergency room to have treated if you start spiking a fever or something like that. Because once you go septic, the bacteria can spread through your bloodstream really fast.
Speaker A [00:15:26]:
Yes, very fast. And it’s terrifying. It’s life threatening.
Speaker B [00:15:30]:
Yes.
Speaker A [00:15:30]:
So when it comes to. So thank you so much. You’ve given us so much information of when you think you have a UTI. What should we do? What about preventing UTIs?
Speaker B [00:15:40]:
So definitely, I would say in general it’s going to be a lot of the same types of things. You want to make sure that you are not just eating huge amounts of sugar every day. You can do the preventative supplements, make sure that you’re drinking lots of water. Also check your pee color because a lot of times people can’t tell what is going on other than just looking at their urine. So when you cat, if you’re doing it into the toilet, maybe cap into something so that you can actually look at it. If it has sediment in it or it’s really dark, then you really want to start thinking about drinking a lot more water.
Speaker A [00:16:11]:
Yes.
Speaker B [00:16:11]:
Sometimes you can catch the UTI coming on and flush it out before it ends up becoming a problem, if you keep track of that. So I always say you want to check for sight and smell and all of that because those are good indicators. And sometimes people will actually have pain or some dysreflexic symptoms, but not even bladder spasms.
Speaker A [00:16:32]:
Bladder spasms too, I’ve heard.
Speaker B [00:16:34]:
Yes. So if you all of a sudden start peeing yourself and you haven’t been doing that before, that might be an indicator that you have a uti. One of the things that I did with somebody a few weeks ago is we’re having lots and lots of incontinence and still needed to flush all that out from the uti. So we just did a condom cath in between his normal cath, so that that way at least his skin was protected and you could still. He could still do his normal calf. So that didn’t mess up his normal bladder routine. But then it also Kept his skin dry and he was able to flush out all of that. And so it cleared out his UTI a lot faster.
Speaker B [00:17:12]:
But sometimes you have to think outside the box a little bit so that you don’t end up because you have to think, oh, if you’re peeing out all the time and you’re not tip, that’s not normal for you. Then you also need to think about your skin and everything too with that. So sometimes you have to be a little creative.
Speaker A [00:17:25]:
Creative, right. Yeah. That’s so helpful. And so speaking of catheters, a lot of people intermittent cath, right? And I have noticed an increase in people getting the suprapubic catheter like a lot sooner I think now than they used to. So, for example, I have some clients that left rehab with a suprapubic catheter, which is super interesting to me because I think, I don’t want to say back in the day because I’ve only been doing this for like two years, but what I really would hear is that people just intermittent cath until they absolutely can’t do it anymore. Usually due to scar tissue buildup from years and years of caffeine, you can’t do it anymore. So then they get the super catheter. So is it a trend or is it better? What do we think? Because I actually have heard that you should not have a super pubic for more than a handful of years.
Speaker A [00:18:26]:
Is that accurate?
Speaker B [00:18:27]:
In general, it does seem like a lot more people are getting super pubic than people don’t even know if they have the ability to intermittent cath. So I really think in general that people need to be proactive and ask about that. Sometimes I think it becomes something of convenience. But what people don’t realize, and I think this is more where some of the medical aspect comes in. So when you have a super pubic catheter, it is continually drained your bladder. And same if you have a Foley catheter, your bladder is going to shrink and over time it will no longer be able to expand. Where if you have an intermittent catheter, your bladder is able to expand and then it contracts when you empty it, it’s continually still being able to expand and contract, which is much better. Eventually over time the super pubic is going to same with the Foley is going to basically permanently shrink your bladder.
Speaker B [00:19:20]:
So it’s going to make it very difficult, more likely to have accidents, more likely to have other issues. Bladder cancer is something that they have to check for over time. More often with a suprapubic because of the way that it affects your body. So there’s just a lot of different things you have to be aware of. I think it definitely shouldn’t be the first line of treatment. And that’s just something again, that you can talk to the urologist about. And if you do have one, it’s also important that they do testing at least every few years to check the inside of your bladder. Currently I believe that they say the testing should be done once a year.
Speaker B [00:19:56]:
But they sometimes they have been changing some of that, so that’s definitely something to also check. But they go in with a camera.
Speaker A [00:20:02]:
Do you mean like the urodynamics exam? Yeah, yeah. I had read that you should do it once a year. And then they changed the, they changed the recommendation to say you don’t need it done every year. But it’s so just crazy to me because people don’t know this. People don’t know. People know what they were taught at rehab. And it depends on who you got that day at rehab, you know, who’s kind of giving you options on things. But I really was shocked that a few people I’ve spoken to said that they left rehab with a super pubic.
Speaker A [00:20:43]:
So I’m like, why would you just jump to that? And it’s like, well, I was given the option and it’s so much easier. So I think, yeah, it’s not the.
Speaker B [00:20:52]:
I think sometimes two people think they jump to wanting to do the suprapubic because they think independence wise it will be so much better because maybe their quad and their dexterity isn’t as great. So capping is a real pain to do. But what they’re not realizing are some of the long term results or effects that they might have from that and they may not be able to reverse them. So that’s one of the things. Once they switch to that and their bladder shrinks, they may not be able to go back to that. So as much as possible, you definitely want to encourage intermittent caffeine. The other thing that people don’t think about is when you have a suprapubic or a Foley that isn’t. That stays in.
Speaker B [00:21:28]:
They are basically, not only are they emptying your bladder all the time, but you have a tube in your bladder all the time. So your body knows that that’s not supposed to be in there and will be continually foreign.
Speaker A [00:21:39]:
Yeah, it’s a foreign object.
Speaker B [00:21:40]:
So it’s definitely tricky because sometimes all that introducing of the catheters with intermittent can introduce bacteria. So the biggest thing is making sure that your hands are clean and that you’re careful what you touch and all of that with intermittent catheter, but you’re also not leaving that in your body. So there can be a lot of issues with that just from having it in your body all the time and it developing bacteria that colonizes in your bladder. So I think the biggest thing is making sure that if you’re getting way more UTIs from caffeine, maybe try switching how you do it and make sure that you’re using clean methods and see if that reduces your UTIs before you automatically switch to a suprapubic. But some people end up having so many that they get less UTIs from a Suprapubic. So it just depends. I think it’s very individualized still.
Speaker A [00:22:29]:
Yes. And also with the bladder shrinking now there’s bladder augmentation surgery. You know, it’s nothing to be taken lightly. You know, they’re using cells, a type of cell that’s not supposed to be there, you know. And I know because we’ve had a conversation with urologist about just options and things like that. And it’s super interesting because like it’s just so complicated, you know. And I think that when we give people these options, they’re like, oh, well, if it’s going to expand to my bladder and it’s like, well, it’s also going to secrete mucus because those cells that they take, they secrete mucus. And now it’s going to be in your GI tract.
Speaker A [00:23:21]:
Do you want. I don’t know. It’s a lot.
Speaker B [00:23:24]:
I think too one of the things, because one of the things that I’ve really tried to work a lot with patients and advocating is that anything you do, you need to think about long term how that’s going to affect your body. You also have to realize any type of surgery is still putting you at risk. Whether that’s a suprapubic surgery or they do bladder augmentation later or some people do my troponoff surgery. So that is a major surgery. And so sometimes you have to really think about is that in my best interest to actually do that because you’re putting your body under a lot of stress in order to do that too. So even though some things may be more convenient, it might not be for months or some people don’t have good results at all. Definitely something that you need to make sure that your health is good regardless before adding all those other things on top.
Speaker A [00:24:12]:
Yeah. Anything else about UTIs.
Speaker B [00:24:15]:
I think that’s probably. I think that’s probably most of them.
Speaker A [00:24:19]:
That’s most of it. All right.
Speaker B [00:24:21]:
Oh, Another thing with UTIs that we definitely want to make sure, and this is a big issue that some people have to fight with their insurance companies about, but you definitely do not want to be reusing catheters.
Speaker A [00:24:32]:
Oh, yes, my lord. Right.
Speaker B [00:24:34]:
That can increase UTIs dramatically. And I know that there are a lot of people that do reuse catheters, so that’s a huge thing not to be doing. I actually know of a couple people that went septic and died because of reusing catheters. So that’s definitely not something that you want to do. And so definitely fight with your insurance if that does become an issue, and tell them that you cannot reuse them.
Speaker A [00:24:59]:
Right. Yeah. That’s so important. I have heard things like that as well. All right, so that’s our little UTI talk now. Next. It’s not a focus of the paralysis nutrition program, but it does come up, and we do kind of see amazing, amazing results when it comes to changing your nutrition when it comes to pressure sores. So skin.
Speaker A [00:25:24]:
Skin is a huge. I mean, I can’t imagine anything. I mean, UTIs and bladder stuff is huge. But I feel like on the scale of 1 to 10 of, like, things that you don’t want, a pressure sore is probably like a 15 on a scale of 1 to 10. And so I’ll just. From the nutrition front, the number one thing that you need to do is start eating more protein, especially if you’re a person who skip meals or you’re a person who doesn’t eat protein. With each meal, it’s very easy to let it go to the point where now it’s getting worse, and it’s getting worse. I have so many people that have gone to wound care for every week for two years, and nobody ever told them how much protein to eat.
Speaker A [00:26:08]:
They just said, eat more protein, but they never said which foods, and they never said. They also never talked about supplements. And so it’s wild to me, because I’ll give you an example. I have someone currently in my program who has had a stage three. It’s small, but it’s stage three pressure sore on her foot, and she’s had it for two years. And she has gone to wound care every single week she joined my program. I think it’s been five, six weeks now, and her sore is almost gone because prior to joining the program, she wasn’t doing any supplements and she was eating. I Mean, we did like a quick kind of review.
Speaker A [00:26:49]:
She was eating like 40 grams of protein a day. Now, she’s a small person, so her regular protein needs are somewhere around 60, 70 grams per day. With a stage three pressure sore, it’s like 120 or something. Grams per day. And so it’s just remarkable how after a little over a month, she’s completely healed it just by increasing the protein. She did do a couple of the supplements, but I’ll be honest, I think it was all the protein and she already drank enough water. So protein, water and supplements, nutrition wise is that’s medical nutrition kind of education for pressure sores. When it comes to your end of the, of the care, what do you want our listeners to know about pressure sores?
Speaker B [00:27:39]:
Yes, so definitely the protein. Adding plenty of protein is a huge issue. And I didn’t even realize. I actually learned it from one of my friends who has a spinal cord injury, but he had a really deep pressure wound. And there is research on exactly how many grams you need depending on what level of pressure wound you have.
Speaker A [00:28:00]:
Oh, you have to actually look at that.
Speaker B [00:28:02]:
Yes.
Speaker A [00:28:03]:
And it’s very easy to do the math, which is why I get so frustrated when people tell me, oh, I’ve had a stage three for two years. Oh, I’ve had a stage two for four years. Oh, I’ve had, you know, I had a stage one, then it was two, three, four. Now I’m looking at a flap surgery and I’m like, how did that happen? Like, did you just not listen to anything that they said? And they’re like, what? What did they say? They didn’t tell me what to do. And so I will tell you, honestly, it really boggles my mind. Really boggles my mind because I said right in the beginning of this episode, they don’t teach you anything in a nutrition master’s program about spinal cord injury. They do teach you a lot about pressure sores. So if you’re a dietitian that works in the hospital, you can rattle off the top of your head how many grams of protein per kilogram of body weight you need for a stage one, for a stage two, three, four.
Speaker A [00:28:56]:
We know all of this. We already know which supplements vitamin C and zinc and the amino acids, they’re not coming to mind right now. But there’s a few amino acids and juvin, like, hello. They packaged it all in one thing. You could take juvenile, and now that’s not available internationally. But there’s so much information for wounds. It’s the one thing in spinal cord injury that a dietitian should know. And what’s staggering to me is that the doctors who are wound care specialists are not just able to give people a number.
Speaker A [00:29:33]:
So my client, she was like, yeah, I eat enough protein. But girl, you don’t eat breakfast. At lunch, you have like a peanut butter and jelly. At dinner, you eat chicken. That’s protein. At one meal, you have a pressure sore. And I think I try to contain my hysteria a little bit, but it’s just kind of like I need to kind of shake people and wake them up and say, this is never going to heal unless you eat enough protein. So when it comes to the wounds, you say the protein, right? Of course, is huge.
Speaker B [00:30:01]:
Yes. So that’s definitely key. I would say one of the biggest things, and this is something that I know a lot of people do not do, but people with spinal cord injuries need to have full body skin checks every single day.
Speaker A [00:30:15]:
All right?
Speaker B [00:30:15]:
Bump your heel on something and have no idea that you scraped it up. You might go through a doorway and your elbow is really messed up. I know somebody that went through, got like a carpet burn and it ended up the next day, it was like down to the bone. So it is really, really important every day to be doing daily head to toe skin checks. And everybody that comes to my camp knows that our entire team is trained in doing head to toes skin checks. And all of our campers get head to toe skin checks every night, which is one of the reasons that they feel comfortable coming to camp because they can do activities all day, but we head to toe skin check them every day. So that is a huge thing that I encourage people to do because you might find just a little red spot that you can quickly put cream or ointment or something on. Whatever your doctor recommends.
Speaker B [00:31:10]:
For some things you can just use like a dacitin. Sometimes people need to talk to their doctors and get specific ointments depending on the spot. But you can treat it quickly and then end up not having it be a huge issue. Other areas that get a lot of other areas to check that can get a lot of issues, especially the butt, because people are sitting all the time, that pressure there. And also the groin and under the breast, under the armpits. Anywhere where it gets sweaty. All those areas get really sweaty and get pressure sores. You can get yeast in there really, really fast.
Speaker B [00:31:44]:
We’ve had it where people were just outside doing stuff and come in and their groin is completely red and nasty. So just checking all those things, even when you think like Even the areas you maybe wouldn’t prefer to have somebody check, but definitely make sure you’re having. If you can’t do it and use a mirror to check yourself, then make sure that you train somebody how to help you do that. So another thing that I definitely recommend, and I always kind of tied in there with skin checks, but definitely you want to be able to do. For women, obviously do breast self exams. The biggest thing, breast, breast self exams, because you want to make sure that you don’t have any lumps or bumps or anything that you haven’t had before. And that’s something you definitely want to check and make sure that you talk to your doctor or your healthcare provider about. Same for guys with testicular exams.
Speaker B [00:32:32]:
A lot of people that have spinal cord injuries are in the that like 18 to 40 age range and that’s the time that typically is the highest rate of testicular cancer. So you definitely want to check. One thing I always say is if you can’t check yourself, train somebody that you trust how to do it, because that is something really important. And you need somebody that knows you and knows your body. So they know, oh, this spot tends to get red more often. We need to make sure we keep an eye on it. Or that in general they know, oh, this is your normal and this isn’t. And so you definitely want to have somebody do that.
Speaker B [00:33:06]:
And I also say make sure that you always train somebody that you trust because you have a say in who touches your body and who doesn’t. It doesn’t matter if you can’t feel it. But I think that that’s also something really important for people to know is you need to have all those areas checked, but definitely have somebody that you trust help you with it because you still have a say in who’s touching you and who isn’t.
Speaker A [00:33:28]:
Yes, that’s so important.
Speaker B [00:33:30]:
Yeah. I would say with skin, one of the biggest things is catch the issues before they become a problem. Once they do become a problem, you’re going to have to do wounds care and increase your protein and your supplements and all of that. But the biggest thing is if you use prevention, you will not end up having nearly as many of those. So you may have to do some things that may seem more awkward, like asking somebody to help you check your groin and check your butt and things like that. But it could end up saving your life because those skin infections can also become septic, which go to your bloodstream and can kill you then too.
Speaker A [00:34:00]:
And you know, and that is just such valuable information. And I will say this, too. When it comes to pressure sores now, everyone in my program has paralysis, right? So I hear similar stories over and over again.
Speaker B [00:34:18]:
Yes.
Speaker A [00:34:19]:
I don’t know if you’d be surprised, but the two reasons that people get pressure sores, one is because of the way they were sleeping. That like. And it’s always something with the heel or their butt. So they. Something overnight. Like, I know my husband, he shifts in different positions through the day, through the night, right. So he knows that in his mind, you know, 18 years now being a quad.
Speaker B [00:34:45]:
Yes.
Speaker A [00:34:45]:
He needs to shift. So it’s become natural. A lot of people sleep very heavy and don’t position themselves, like, in different ways. Right. So that’s one thing. The big reason that is kind of recurrent is people get a colonoscopy and the colonoscopy prep, right. You have to drink that vial liquid, and it makes you poop for hours and hours and hours. I can tell you I have had at least five people.
Speaker A [00:35:17]:
And, you know, I don’t have hundreds of people in the program. You know, I’ve had at least five people this year tell me that they got a pressure sore or three while they were doing their colonoscopy prep because people with paralysis are already constipated. They’re already, you know, have neurogenic bowel. There’s a lot to come out, right?
Speaker B [00:35:38]:
Yes.
Speaker A [00:35:38]:
Then they drink the colonoscopy prep. I had one woman that was on the toilet for 18 hours.
Speaker B [00:35:43]:
That’s a lot.
Speaker A [00:35:44]:
There was nothing else to be done. And so I will just say those are the two top reasons that I have heard for people getting pressure sores. Of course, just, you know, bumping yourself and, you know, different pressure kind of situations where you’re sitting too long, these things, of course. But those two particular things have been coming up. So I just wanted to mention that.
Speaker B [00:36:06]:
I would definitely say in general, for people that are heavy sleepers, if you do not have somebody that’s helping turn you at night, you may either need to set up a system so that you have an alarm so that you remember to turn. I know quite a few people that do that. Other people just have somebody check on them every four hours or at least once in the middle of the night to make sure that they turn so that they’re not in the same place. You also always have to check. A lot of people don’t think about heels. So sometimes some people will use, like, a soft boot at night to keep their feet.
Speaker A [00:36:37]:
Oh, yes. Rubbing. And especially if you Spasm. Right. So, like, if you spasm. I have one person who had a pressure sore on her pinky, and it was caused by the boot.
Speaker B [00:36:52]:
Okay.
Speaker A [00:36:52]:
Because she’s spastic, and she’s always having those spasms in the same spot. You know, it’s hitting the boot. So. Yeah, that is. That’s a very good point.
Speaker B [00:37:02]:
So it definitely depends. But sometimes the boots will help keep you from rubbing. Other people will have, like, a pillow underneath. Basically will look like when your feet are on the pillow, that your heels are just hanging off the top.
Speaker A [00:37:15]:
Yes.
Speaker B [00:37:15]:
We really want to do is make sure people tease me because I go around doing foot checks. Heels are not on the bed. So you can stick a pillow underneath so that your heels are basically. It kind of looks like they’re suspended, but they’re up in the air, not pressing down. And that can really help a lot, too. So you definitely want to think about where’s the pressure. And if you’re not sure, sometimes it’s. People need skin check.
Speaker B [00:37:42]:
Like in the morning when you’re getting up, when you’re going to bed, and it’s just good routine when you’re getting up, changing, showering, all those things. Just if someone’s helping you, have them help you check. If you’re doing it yourself, then just check your body over. I think it’s sometimes surprising how few people actually check themselves at all.
Speaker A [00:38:01]:
Right.
Speaker B [00:38:01]:
So I think really prioritizing, make sure you’re checking that stuff. If you see that you have an issue, then you want to get that treated as fast as possible, even if it’s just a little red spot.
Speaker A [00:38:11]:
Yes, I agree. People are so. I think. I don’t know what the word is. I don’t know why people are so hesitant. Like, it’ll come up every once in a while. Like, oh, you know, I have a little thing. Like, no one wants to talk about it.
Speaker A [00:38:23]:
Like, I have a little, you know, it’s not really anything, but it’s on my leg. And I’m like, go to wound care. Like, I cannot stress this enough. Like, you need to have somebody look at it today, not next week, when it’s, like, open, you know? Yes. Prevention is key, and getting it as early as possible is key. All right. And sort of related. So you were talking about elevating the feet and stuff.
Speaker A [00:38:47]:
So foot swelling, blood pressure, things like this come up in my program, and people are really surprised when I tell them you don’t really have to watch your salt intake because people with paralysis. Will spinal cord injury have a higher Fluid need. Right. I mean, sorry, Salts, higher sodium.
Speaker B [00:39:08]:
Right.
Speaker A [00:39:09]:
And so I think that the, you know, general nutrition information that’s out there is, like, watch your salt, cut your sodium, and, like, keep saltines by the bed. You know, keep them by the standing frame in case you get dizzy. Don’t worry. You know, like, we’re not pouring salt on things, but we definitely need to make sure that we have enough. Right. So. And you are the one. You were the one who actually suggested that study, because Lauren had sent me a.
Speaker A [00:39:39]:
You had sent me a study about spinal cord injury and sodium. So I always appreciate that. Right. When we find the good research out there and we share it with.
Speaker B [00:39:48]:
Yes. We help each other with this.
Speaker A [00:39:50]:
Yes, yes. It takes a village. It takes a village. So I just didn’t want to mention that blood pressure thing. And the last thing now, I mean, we know what autonomic dysreflection is, right?
Speaker B [00:40:01]:
Yes.
Speaker A [00:40:02]:
Can you share? Because that was the other. The wounds, the UTIs, the blood pressure, and the autonomic dysreflexia was kind of the last subject that people were asking me to ask you. So in a nutshell, what do we do if we’re seeing our partner get dysreflexic, or if you yourself feel like you’re getting dysreflexic? What do we do? I’ll tell you what I do. I get the nitro paste.
Speaker B [00:40:29]:
Yes. So one of the biggest things, I think. So in general, when you think about autonomic dysreflexia, we think about our fight or flight reflexes, and then. So we call our parasympathetic and our sympathetic nervous systems. One balances out the other. So you have your fight or flight system, and then you have your system that is balancing it out and making it so you relax and everything else. What people don’t realize with autonomic dysreflexia is that those are basically both going at the same time. So you have basically fight or flight reflex up above your injury, and then below your injury, you typically have the opposite.
Speaker B [00:41:06]:
So you’ll have rest and digest.
Speaker A [00:41:08]:
That’s a rest and digest.
Speaker B [00:41:12]:
You’ll have a really, really high blood pressure, which may be like 200 over something, but your heart rate may be super low. So it’s definitely important. First, before you do anything else, you need to make sure that you’re starting to get that blood pressure down. So if for some reason you end up that you cannot get your blood pressure down, you need to be in the ER right away. And the thing that you need to tell them first of all, is that your blood pressure needs treated stepped. So obviously, autonomic dysreflexia is caused by any stimulus that is noxious to the brain. But the signal is traveling up your spinal cord, but it’s getting blocked and not making it to the brain. So the stimulus just keeps on firing until you get rid of that stimulus.
Speaker B [00:41:50]:
But by the time your blood pressure is 200 over something, you may need to just treat the blood pressure first, and then from there you will figure out what the stimulus is, what’s causing it, and go from there. Most of the time, the stimulus is caused because you need to cat. You may have a kink in your catheter. So if you do have a suprapubic, maybe you sat on part of it and it’s not draining properly. It may be that you’re constipated and you need to.
Speaker A [00:42:12]:
Yes, yes. People don’t realize. People don’t realize that being constipated can give you dysreflexia. It’s true. And also, of course, the number one thing is you need to go. Cathy, you need to pee.
Speaker B [00:42:25]:
Yes.
Speaker A [00:42:26]:
In my husband’s case, the heat makes him dysreflexic.
Speaker B [00:42:29]:
Yes. So he can do it. Pain can cause it.
Speaker A [00:42:32]:
Pain.
Speaker B [00:42:33]:
You can also. People say, like the 5p. So you have pee, poop pain. And I know that pleasure is one of them.
Speaker A [00:42:40]:
So, yes, some people.
Speaker B [00:42:42]:
Dyslexia. I think I’m missing a p. I’m trying to remember what the other one is. Anyway. Might have to take out my five Ps. But anyway.
Speaker A [00:42:51]:
Multiple this time, we need index cards.
Speaker B [00:42:53]:
Right.
Speaker A [00:42:56]:
I think that I don’t remember what the situation was, but we got into it. Must have been the heat. Cause that’s really what caused it for my husband. So we know how to kind of keep it away. Cause we know he can last a certain amount of time in the heat. We have cooling packs, we have ice packs, we have fans all over my house. It’s ridiculous, but I think that when you know what to do, it’s just easier to have your house kind of set up for that kind of thing. So with dysreflexia, I mean, I can’t remember what it was that happened, but the doctor that we saw after my husband had this episode gave us a prescription for nitro paste.
Speaker A [00:43:36]:
So it’s nitroglycerin, but it’s a paste. It’s like a toothpaste kind of thing.
Speaker B [00:43:40]:
Yes.
Speaker A [00:43:40]:
And you can just kind of rub it on Your body, like on your forehead real quick, and it takes your pressure down. Some people do take nitroglycerin tabs, like pills to get the pressure down. What. Is there anything else you can do? Like, we’re, we don’t. It doesn’t happen to us very frequently because. Because I’m a freak. And the second I see my husband’s cheeks turning like kind of reddish, I’m like, you’re getting dysreflexic. What is causing this? And you know, we deal with it before it gets out of control.
Speaker B [00:44:09]:
But so obviously that’s the. Sorry, that’s the base. Making sure, if you know that something triggers it, is being prepared. If you know that you get constipated a lot and that’s what’s causing it, you probably need to readjust your diet and things like that, not just take a whole bunch more meds for pooping, because that’s only going to cause a whole bunch of other issues. The whole. All the skin issues and all that all over again. But the biggest thing is making sure that your diet is good and that you’re actually emptying. Well, another issue that people have is they will only do bowel program maybe once or twice a week.
Speaker A [00:44:42]:
Oh, God, don’t even get me started. Super backed up, super backed up, super backed up. And it’s crazy because I actually have a couple of people in my program right now who have been injured for 20 plus years. And the information, the last thing that they heard about bowel program was at rehab. And at that time they were told, you do bowel program twice a week. You take Miralax, you take softeners, you take Senna, you take laxatives. And nobody told them about diet, Nobody told them what to do. And so I’ll tell you the honest truth.
Speaker A [00:45:18]:
I think that you’re completely correct in that all of these, I call them poopy pills. They make things worse. Miralax is probably the worst active ingredient. What? Peg? Polyethylene glycol, which is literally plastic. So if you are taking all these pills all the time, you’re not eating enough fiber, you are not eating three meals a day, you are not drinking enough water. This is going to cause major, not just even constipation. People get fecal impaction.
Speaker B [00:45:48]:
Yes.
Speaker A [00:45:48]:
People end up in the er. People end up in the ER with dysreflexia. And they’re like, what is happening to me? And it’s like, oh, well, you haven’t pooped in, you know, 20 years. You’ve pooped like, you know, once a week. And so it is now caught up with you. So quickly tell us, other than diet, right? Because that’s a huge, huge part of bowel care. What do you want people to know from a nursing, from a medical point of view about bowels?
Speaker B [00:46:16]:
So, okay, so about bowels. So in general, I would say you definitely want to think about same thing as you want to make sure that you’re proactive with everything. So I would say the very biggest thing, obviously, is diet. The other thing is making sure that you empty regularly. You also want to make sure that the routine that you’re using does not injure your skin either. And the other. So that’s something else I always talk to people about, because I know some people do their bowel programs on the bed, some people do them in a chair. But if you’re sitting in a chair for four hours, that is probably not the best idea for your skin.
Speaker B [00:46:50]:
So you may need to think about how you’re doing that. You always want to keep skin in mind, whether it’s stuff with your catheter and your bladder, whether it’s stuff with your bowels, skin is still a huge part of that. So a lot of people tend to develop hemorrhoids over time. And some of that can be from all the digital stimulation. Some of that can be because of being constipated a lot. So you want to make sure as much as you can that you’re eating all those fruits and vegetables and things that are keeping your stool soft.
Speaker A [00:47:17]:
And you had mentioned Lauren earlier about the UTIs and, like, not eating too much sugar. Please, please, let’s clarify. We are not talking about two servings of fruit a day as being sugar. Because people are going, as soon as you said it, I was like, I have to get to go on the record and say you still are eating fruits. When Lauren is talking about excess sugar, we’re talking about cakes, cookies, juices, Right? We’re not talking about whole grains. We’re not talking about peaches and pulls and apples. We’re not talking about that. So, sorry, go ahead.
Speaker A [00:47:50]:
I just wanted to clarify that.
Speaker B [00:47:52]:
But that’s definitely all of that plays into it. I think fiber, too, is just a huge issue. People don’t realize that not having enough fiber is going to. But then if you have a lot more fiber, you need to have a lot more water. So you just need to think through all of that. But just increasing your water and increasing your fiber and moving your bowels more can decrease incidence of cancer and things like that later on in life. So you want to make sure that your stools are not just sitting in there for days.
Speaker A [00:48:19]:
Yes. It’s literally, it’s, like, toxic for your body. And so people, you know, I know, because a lot of people say, oh, my God, a bowel program every day. And I’m like, yes, you should poop every day. This is the gold standard. But there’s so, I think, let’s be honest, people who poop two, three times a week, it’s not like they’re in and out in 20 minutes. It takes forever. And that’s kind of like, all right, well, no, we don’t want you to do that seven days a week.
Speaker A [00:48:51]:
We want you to be in and out in, like, 45 minutes or less. We want it to be easy. Maybe you don’t even need a suppository. Like, all of these things that they learn in rehab are to be questioned. Right. And I think that the way that they are taught is sort of backwards. Right. It’s like they’re taught to take Miralax.
Speaker A [00:49:09]:
They’re taught to take senna and laxatives. They’re not taught to eat a healthy diet. And if you’re backed up, you could take, you know, one of those things. Right? That’s what those things are for. They’re for sort of, you know, poop emergencies where it’s been two days and you didn’t poop, or it’s been three days and you didn’t poop. But those are not, like, the first line of defense. Right. You shouldn’t be doing those things regularly.
Speaker B [00:49:31]:
So it’s definitely difficult. I know some people that aren’t able to do it without you may have to do a combination. But regardless, even if you need an enema to get things going, you’re so better. Clearance and get a lot better if you’ve had fruits and vegetables and fibers. One of the things, even at our camp is that we try to make sure people have lots of protein and fiber and fruits and vegetables in all of our meals. It’s still camp food, but compared to what a lot of people have at home, they’re eating. They’re eating better because we have salad at lunch and dinner, and we have fruits and vegetables. So some people say that they feel better during even our week of camp than they do all the rest of the year, because they have.
Speaker B [00:50:15]:
We’re doing their skin checks twice a day, and they’re eating healthy, and they’re getting outside and getting fresh air and sunshine.
Speaker A [00:50:20]:
Sunshine, yes.
Speaker B [00:50:23]:
All those different Aspects. We don’t even. We do the camp. We don’t even do it just for a health benefit. That’s just kind of an extra perk.
Speaker A [00:50:31]:
An extra perk, yeah.
Speaker B [00:50:33]:
But that is something that we’re able to see. Even when people have better diets, then they’re pooping a lot better and they feel better in gym.
Speaker A [00:50:40]:
Yes. And the bloating goes down. I have so many people who join the program literally just for bloating. It’s like, oh, I’m so bloated. I don’t know why. And I. I always know why. It’s like, oh, because you poop twice a week.
Speaker A [00:50:52]:
Like, that’s why.
Speaker B [00:50:52]:
Yes, that’s a lot. And people don’t feel well.
Speaker A [00:50:55]:
Yeah, you don’t feel well. It’s literally. I mean, you are sitting with all of this waste in your body. Like your body doesn’t like that, you know, so, yeah, that’s why it’s important to poop every day. It’s the gold standard, so definitely too.
Speaker B [00:51:10]:
And back to the thing of autonomic dysreflexia, though, it’s still the same. Like, we would just really want to encourage in general prevention because your urinary tract infection is going to cause autonomic dysreflexia. Having constipation is going to cause autonomic dysreflexia. Having skin issues is going to cause it. And sometimes you may get it and you have no idea what causes is causing it in general. But the main thing in general is just to make sure that you are staying on top of those things so that autonomic dysreflexia is not something that is. Is impacting your life severely.
Speaker A [00:51:38]:
The other thing is it’s not happening frequently because it’s going to happen. It’s going to happen. But let’s check all of our boxes and do our due diligence so that the most common causes that can be avoided are avoided. Right.
Speaker B [00:51:50]:
Yes. And then the main thing, the other thing too is always being an advocate, explaining why you have this and what this looks like for you. It may look different for you than it does for somebody else. Somebody may have a blood pressure of 200 over 100 and that may be what their autonomic visceral flexia looks like. Somebody may have their blood pressure be 120 over 80, which if they take your blood pressure, when you get to the er, say, oh, your blood pressure is great, but they don’t really realize that you run 90 over 50 there.
Speaker A [00:52:18]:
Yeah. That your baseline as a wheelchair user is always low, you know. So yes, like if my, you know, if my baseline is low and it comes out at 120 over 80 and the healthcare professional is going to be like, oh, it’s perfect. And it’s like, no, I’m having ad. It’s really, really bad. I remember, I have, I don’t remember what it was exactly, but I have heard my husband explain calmly red faced a couple of times what AD is. Because the person that was there didn’t know, you know, whether it was a doctor or nurse. They did not know, you know, what that was.
Speaker B [00:52:54]:
So I would say one of the best things that you can do is explain things in layman’s terms, even for medical professions when it comes to ad, just because people do not get a lot of training in it.
Speaker A [00:53:04]:
Right.
Speaker B [00:53:04]:
Yeah. The refoundation has cards that you can get. Christopher Dana. Refoundation has cards you can get to carry in a wallet that have information about ad. So.
Speaker A [00:53:14]:
Oh, wow, okay.
Speaker B [00:53:15]:
That can be super helpful. I also definitely recommend even having a explanation that is very, very simplistic because if you’re in an emergency, people aren’t going to have time to read your whole pamphlet from your wallet.
Speaker A [00:53:29]:
Yeah. About the nervous system.
Speaker B [00:53:31]:
So I have done. And this is something, if people are interested, they can send me a message on Facebook too. Or Facebook or Instagram. But one of the things that I have done is gone through and worked with people and actually put together their medical history and then anything they would need in the hospital. So this is if I have dysreflexia, this is what it is and what it looks like for me. Or I need digital stimulation. This is what it means medically. And then also for me, this is what I actually need.
Speaker B [00:54:01]:
Because that can be different for every person. Yeah, some people are on the bed and need complete stimulation the whole time for two hours maybe. Some people might just sit on a shower chair or their commode and have a suppository inserted and they just sit and do the rest and that’s it as far as their bot programs. And it’s so different for every person. So one thing that I have done some is basically personalized medical histories and explanations of here’s what I need and here it is in layman’s terms and in the medical terms. So that if you’re going into the ER or the hospital, you can basically hand them your sheet and say, this is all everything you need to know about me right now.
Speaker A [00:54:38]:
Yeah, in a nutshell, this is who I am. And what I need. All right, Lauren, thank you so much. We talked about so many different things. We went over UTIs, we went over skin bowels, blood pressure advocacy. This was such a valuable episode. And let everyone know where can find you on Instagram. You are CI underscore nurse.
Speaker B [00:55:00]:
Yes.
Speaker A [00:55:01]:
Yes.
Speaker B [00:55:01]:
So that is the main page I use as far as for all this final word stuff that I post. I’m still getting the page going so being grad school too but definitely check it out. And then I also run Camp Possibility. That is Camp Underscore Possibility. POS A B I L I T Y plan words for ability. So that is another way that people can find more information about things that I do too.
Speaker A [00:55:24]:
Thank you so much Lauren. This was such a great conversation. So much valuable information for our listeners. And until next time, sounds great. Thank you. That’s our episode for today. Thanks for listening. I hope you enjoyed it and that you learned something new.
Speaker A [00:55:38]:
Remember, if you want to lose weight with paralysis, improve your bowel health and feel your best you can. It’s possible, you just have to change your eating habits. If you need inspiration on how to get started, check out the paralysis Nutrition Cookbook. 101 recipes to help you lose weight and improve bowel health. The cookbook comes with a bonus 30 day meal plan and is the perfect way to start eating healthier. You can find it online@paralysisnutrition.com cookbook. I’ll talk to you again soon.
