Speaker 0 00:00:05 <inaudible>
Speaker 1 00:00:35 Thank you for joining disability and progress, where we bring you insights into ideas about and discussions on disability topics. My name is Sam. I'm. The host of this show. Charlene doll is my research assistant getting new Charlene good evening, everyone. And if you want to be on my email list or reminder, you can email
[email protected], S a M J a S M I N e.com tonight, ms. Or multiple sclerosis. And we have Nikki foster in the studio getting new Nikki. Good evening, Sam. Thank you so much for coming back. Thank you for having me, Nikki is just, she couldn't get enough of us and she came back to share her wealth of information, so we're very excited to have her. So thank you very much. Um, Nikki, can we start out by just, can you give us a definition of what is ms or multiple sclerosis?
Speaker 2 00:01:34 Yes, I can. And I would just preface this by saying I am not a doctor, so, Oh, well, yeah, that's okay. Just know that, uh, anything I say is what I've learned along this journey. And so multiple sclerosis is a chronic degenerative disease of the central nervous system. And our central nervous system is our brain spinal cord and the optic nerve. And it controls everything really. When you think about it, it controls our breathing, our eating, our movement. Um, and so, and it's an considered an auto-immune disease. There's a lot that they're still learning about ms, but they do know that there's some sort of immune, um, event that triggers ms. And in many cases, what happens is, you know, you have, let's say you get sick. And in my case, I had a surgery. And so your immune system is working really hard to fight something, but it doesn't know the difference between good cells and bad cells.
Speaker 2 00:02:26 And so as it's fighting the infection, it starts to attack good cells. Um, and for ms it attacks the, uh, the coding of the nerve called myelin. So if you think about your iPhone charger and the, the coding that covers it, it basically eats away at that, um, at that lining. And so it leaves behind scars or the sclerosis, and then the multiples that you typically have many. And so that is, um, that is with, uh, with multiple sclerosis is really what it is, is that degeneration of those nerves that causes, um, the symptoms and, and, and the challenges
Speaker 1 00:03:03 Talk a little more about the symptoms.
Speaker 2 00:03:05 Absolutely. So, um, ms is different for everybody. I mean, it's one of those diseases that is kind of considered a snowflake disease, um, because it can really present itself in so many different ways, but the, the symptoms can range from weakness, muscle weakness, um, vision loss, um, tremors, um, and spasticity, or kind of tightening of the muscles. Um, there can be bladder, bladder issues, um, you know, just numbness and tingling is another common symptom of ms as well as fatigue. Fatigue is usually one of the, um, one of the symptoms that will bring people to really know something is wrong because it's, um, uh, fatigue. That's really hard to put into words. It's a very overwhelming fatigue. Um, it's, it's not, I take a nap, I wake up, I feel great. It's I take a nap and feel like I need to just find the next couch till I die and, um, and continue sleeping.
Speaker 2 00:04:03 So that fatigue is very, very common as well. And I think that that fatigue, you know, your, your body is fighting itself every minute of every day, because it's really trying to, um, you know, to kind of correct itself on this immune system. And so it just causes this overwhelming fatigue. Um, there can also be cognitive changes and emotional changes that happen with ms. And a lot of cases that it's sort of depends on where the lesion or the sclerosis, that scab, that I talked about, that that happens when there's an attack on a certain part of the, the nerve. Um, it kinda, it depends on where that, that Lance and it's. So, because that's what makes, and that's what makes it such a confusing disease for doctors and patients really, because there's a lot of parts of your nervous system that it's, that it can present in.
Speaker 2 00:04:54 And so it partly depends on where, um, those lesions might might land. And that is just up to chance really. There's no predictive ways of knowing how that happens. Um, and so those are a few of the symptoms again, ranging, um, for everybody, the one symptom that I think of as being pretty common with people with ms is some of the emotional parts. So the unpredictability of it, and just not knowing, um, you know, when you'll have another relapse, what that relapse will entail, how, and if your body will recover, um, from those, because, um, you know, and I'll talk about this, I think probably a little bit later, but as you go through relapses, um, sort of your healing from that, um, is just it's uncertain. And so I think that uncertainty and that unpredictable nature of the disease is something that everyone with ms lives with every day.
Speaker 1 00:05:47 So, you know, um, fatigue is like a lot of things have fatigue attack to them. So how do you go about diagnosing,
Speaker 2 00:06:00 Right. Um, so the diagnosis of ms, I think, um, because it does present itself as so many different could be so many different diseases, um, and even, you know, fatigue can be, I just had a child and I've got, you know, a two year old at home and I'm tired from, from chasing after them. Right. So, um, so really the diagnosis process can be a frustrating one because, you know, something is wrong there, isn't kind of a, um, a checklist if you will, for ms. In the doctor's office. And so diagnosis can be, uh, just a different process for everyone. I've heard many stories from, uh, my friends with ms that, you know, it can take as long as 10 years where, and, and I know for, um, you know, I, I think I've probably had it a lot longer, um, before my official diagnosis. Um, and so a doctor will kind of, I think after looking at a host of symptoms, um, they'll send you for an MRI scan and sort of taking a look at that, um, central nervous system and seeing if there's any of those scars is how it's suspected. And then they typically confirm, uh, an ms. Diagnosis through a spinal tap. Cause there's some spinal fluid. Yes. Yeah, that's exactly right. It's not probably
Speaker 1 00:07:20 Sounds like it is.
Speaker 2 00:07:23 Yes, it is. Um, something I would not wish on my worst enemy because it is, it's a very painful process, both having it done, but then also the recovery can be very challenging. And so, um, and that, that's how they confirm the diagnosis. And they're really working hard at speeding up the diagnosis process because it can really impact how the course of the disease for, for people, um, if you're able to get on a treatment faster or things like that. And so they they've really been changing the diagnostic protocols in recent years and, um, was a lot of input from physicians and patients. And I think that's great progress, um, to, to get to the diagnosis faster. It's also around raising awareness with physicians, you know, uh, um, general practice Dr. May not have a specialty in ms. Um, because it it's, uh, it does kind of have that specialty nature. Um, and so raising awareness of, of symptoms to re, to really kind of raise red flags and get people to that diagnosis faster. Um, and so it just like the disease, everyone's got a, um, a unique story, but that that's typically how they diagnose it.
Speaker 1 00:08:31 So, Nikki, you had, you had your own introduction and that's why you're back on, um, when we first interviewed you, you were, so you were pretty new. We were talking about that and you were pretty new to it. Um, now you've had a little chance you want to, but I'd love to hear like, kind of your story, like, how did you discover and, and what that was like for you? Absolutely. So
Speaker 2 00:08:57 I was, um, introduced to running by my, uh, my baby sister and, uh, started running, um, following her, her lead if you will, because she really talked about what a great, um, great thing it was for her to, you know, distress and health wise. And so I took that up and one of my good friends and I, uh, spent 2013 running a race every month at different different lengths. And, um, and I really, I was like, I never thought I would be a runner. I wasn't quite yet 40, but I was approaching it pretty fast. So this was something I took on, you know, uh, that later in life, a young age still, but it wasn't something I had started doing in my youth. And so it was just great and enjoyed it in 2014. Um, my friend and I were gonna, um, be, you know, turning 40.
Speaker 2 00:09:47 So we decided to challenge ourselves and run a half marathon. So we trained for that during 2014. Um, and so we did that in October of 2014, ran a half marathon in st. Paul. And about a month later, I was walking into work and my right leg gave out from under me. I couldn't control my ankle and I couldn't control my knee. And it was very frightening and very puzzling because I was, uh, you know, thought of myself as a runner and suddenly didn't have this muscle control. And so I remember, you know, just kind of using the walls to, to get into an office and, um, call my husband and, and talk through what to do. And I went to a general practice doctor and he diagnosed it as a pinched nerve in my lower back, um, from running off the only was right, right.
Speaker 2 00:10:35 And so with that in mind, I thought, well, I'll just go to the physical therapy that he's recommended and everything will be great and I'll be back to running. And during that time, things just got, went from bad to worse. And one day I couldn't control my leg, um, to the point where I couldn't move my foot from the gas pedal to the brake. Um, and that was very frightening. And my physical therapist in about early January, 2015 said, I think you need to see neurology. And so I, I made that appointment, thankfully the next day they'd had a cancellation. So I was able to get in right away, which was pretty unusual. And I remember calling my physical therapist, her name is Laura, and saying to her hopes frightened, I was, and she said to me, you know, Nicky, whatever has happened to your body is done.
Speaker 2 00:11:20 And we just need to figure out what it is so we can work through it. And in that moment, it was kind of, you know, in my mind, I'm like, well, of course, you know, it, she just made me see it with greater clarity. And so throughout the month of January, I went through the different diagnostic procedures, the MRIs, the spinal tap. And at the end of January, 2015, I received a diagnosis of relapsing, remitting, multiple sclerosis. And so that was, um, that was a shock, but that is how I got to, um, the diagnosis, the story doesn't end there, but that's, that's the diagnosis story.
Speaker 1 00:11:55 Yeah. That had to, so while we're with that, are there more than one different type of ms.
Speaker 2 00:12:03 Yeah. And the way this is being defined as changing as well. But, um, they, they really think through four different types of ms. One is clinically isolated where there's one, one type of one, one attack, if you will. And there's no, um, chronic condition that, that develops, um, then there's relapsing remitting ms. In which, uh, in about 85% of the ms. Population is diagnosed with this type of ms to start. And it's where you go through periods. It's, it's called, it sounds like remission, but it's not remission because ms never goes away. It's, there's never really a true remitting, um, period for people with ms. But it does, you do have acute relapses. So what I was describing with my leg giving out from under me and, and really not knowing where that right leg wasn't space, basically, that was a relapse. And so you go through, uh, where the disease is really active, there's inflammation in your body.
Speaker 2 00:13:00 That's causing these, this attack to happen, the lesions or the sclerosis to form. And so that's relapsing remitting. The third is secondary progressive ms. So about 50% of those diagnosed with relapsing, remitting will eventually transition into secondary progressive, and that's where the relapses become less frequent, but the disability symptoms increase where there's, um, this is where it becomes more difficult to walk. Um, there may be other dis you know, you just move up in the disability scale, if you will. And then the fourth type is called primary progressive, which is where, um, the disability progresses really quickly from beginning from the start of diagnosis. So those are the four types of, of ms.
Speaker 1 00:13:44 So the first type you mentioned is it like they have, uh, an incident or whatever you call it, uh, and, and never again then,
Speaker 2 00:13:53 Yeah. It's just, uh, an event where there isn't, there, aren't a lot of signs of, of ms. Um, you know, from that clinical standpoint. And so it's just considered an isolated instance. Um, and again, I think they're taking it to be honest, I don't know a lot about the different protocols, but in my sort of cursory reading of it. I think that is one that they're not investing as much time in now and kind of thinking about the different types even differently.
Speaker 1 00:14:19 But if you did a scan on them, would you find the same, you know, Mylan gone and the same scarring or whatever as you would on anybody with ms. You know,
Speaker 2 00:14:32 I'm not entirely sure. Um, I'm not sure about that. Okay.
Speaker 1 00:14:37 Well, certainly for different. And you have the second. Yeah. So talk a little bit about, I mean, that must have been pretty devastating for you. Um, were, were you in your life with that? Did have kids,
Speaker 3 00:14:52 Did you, how was that for you?
Speaker 2 00:14:55 Yeah, it, um, it was quite a shock. So I have, um, two children. Um, one is a senior in high school and the other is a freshman in high school. Um, and at the time of diagnosis, they were 13 and 10. Um, I had just switched jobs. So I'd been in my job about a year and a half, and, um, was really, you know, again, I was running, I was like, you know, as a runner and, and things were really great. I've been married to my husband for 20 years. We're actually high school sweethearts. So I've known him for longer than that. Um, that's so sweet. And I sometimes think that if we can survive senior prom together, we can survive ms together. So, um, you know, and, and I guess it really was such a shock to the system. I mean, you're just, and I just didn't know a lot about ms.
Speaker 2 00:15:47 And it was just this uncertainty and, and the weight of it. And, you know, it's not a life-threatening disease, but it is definitely life altering. I mean, you just are left with this. The doctors really can't tell you, you know, what's going to be the progression of your disease. They can't tell you whether you'll be able to run again. Um, if you'll walk again, if certain symptoms will die down, like when, when you're diagnosed, they kind of say, we just have to kind of watch and see what happens. Um, and so that's, it's just kind of scary because you don't know if you need to modify your house, if you need to, um, think about your work situation, how is it going to impact our financial future, the kids? I mean, just everything kind of comes weighing down on you pretty fast and furious. Um, and so it was a very over, it was a very overwhelming time. How
Speaker 3 00:16:38 Did you introduce it to your kids?
Speaker 2 00:16:41 You know, so I made the decision when I started having symptoms and, um, and everything not to not to give a name to it. Um, they were watching me, um, and certainly there was something different about me, um, and in terms of struggling to really control that, that leg, um, and just not feeling great. Um, but because I didn't have a definitive diagnosis, I didn't want to put something out there that was not going to be the case and have to change it. So, um, once I was officially diagnosed, um, we just sat them down and shared it with them. And, and just shared that we didn't know a lot, either that we had a lot of questions that were open-ended one really funny thing is my son. Again, he was 13 at the time. He, um, he said, I knew it was ms. As soon as you went for the spinal tap, I knew it was ms.
Speaker 2 00:17:32 Cause we learned about it in biology. Oh my gosh. So, you know, he had this knowledge, um, I feel badly thinking about him having that on his mind during that really, you know, that diagnostic process was really scary. I mean, they watched me go through the symptoms of a spinal headache and, you know, all these different things I was going through. And so, um, that's really, uh, how we introduced it and my daughter, um, the next day, um, she said to, I asked her if she was feeling scared and she said that she wasn't scared that she knew I was okay because I was in the hands of God. And that was her sort of belief system just shining through and her way of thinking about it. And, um, so they, they really responded and very, um, what I would expect of them. And so that was their, uh, their experience could be introduced to ms.
Speaker 1 00:18:21 Did you have family or friends that you had seen goes through any of this before? Or was this your first kind of introduction to it?
Speaker 2 00:18:31 Well, in a very, um, this is so fascinating to me. So when I was going through symptoms, my husband said, you know, I'm not a betting man, but if I were to run the numbers, the chances of you having ms are so low because Erica, one of my best friends has ms. So, and she's one of, there's four of us that are very, very close. And, um, he's like, what, what would that be, you know, to have to have, we all went to college together. One of the chances that two out of the four of you would have ms, but, um, good thing. He didn't place a bet. Um, so I'd been introduced, um, to my friend who had been diagnosed about, um, gosh, you know, really only four years prior to my diagnosis. And again, her experience is very different. And so, um, so, but I, today, I think back on that and think, you know, I really didn't understand what she was going through at that time. And, um, uh, but certainly we've been each other's, you know, close support through all this as have all my, my friends, but we have that, um, we can talk in shorthand. Um, so we, and, um, so that was really my first close experience. I knew people growing up that had ms you know, friends with my mom and, and other things like that, but I didn't, hadn't seen the real impact of the disease until I was diagnosed.
Speaker 1 00:19:51 Does ms. Run in families?
Speaker 2 00:19:54 They don't know. And that's where a lot of research is, um, focusing because they're, they do think there's a hereditary component to it. And I've certainly heard a lot of stories of moms and daughters or, um, moms and sons. And so there, there is a component, but they don't, um, consider it to be a hugely genetic, um, uh, condition. Um, but certainly something that when you have a parent with any, um, neurological condition that you're kind of, you know, you're, you're watching that and making sure that, um, there's really nothing you can do to prevent ms, but just making sure, keeping it, maintaining a healthy immune system, for example. Um, but yeah, so that's all they really know. It's, um, it's a big mystery
Speaker 1 00:20:39 Now, your kids are kind of in the teenage years, how are they pretty good about dealing with this with their friends? I obviously it's a topic.
Speaker 2 00:20:49 Right. You know, they deal with it, um, differently. Um, my son is a more private person just overall. Um, so I think he, you know, he, he copes with it in that way. My daughter, um, we do the ms walk every year and she has friends that have done it every single year with us, which is really awesome. And, um, but I, you know, they each just there, it's just beautiful how they respond to it. So I'll just tell a quick story. My son was the marching band, um, drum major, um, last year. And so I had told him that I wanted to walk a parade before he graduated. Cause I just haven't felt comfortable walking, uh, praise with him because, um, my leg is still pretty weak and I worry about falling or tripping and messing up the parade route. And I would just be devastated.
Speaker 2 00:21:36 I embarrassed him in that way. And, um, so I walked to prayed with him in, in June and he actually gave a speech and said to the entire marching band and all of their staff, that it was a special parade because his mom who had ms and had made this goal and that I had walked with him that day and to thank me and congratulate me and very special moment, I mean, to have him do that, um, it was just amazing. And, uh, and sometimes the, the impacts on them are really, um, hidden from me because I think, you know, they try and be really strong, but, um, my daughter wrote a paper about how there was a day where she worried that she would never dance in the kitchen with her mom again and that she had. And so, and I, you know, it was so wonderful for her to share that with me. Um, but you know, some of that that I just didn't see. So they, um, I think it is really how I've always been empathetic and compassionate kids, but I think it's just, they, they look at things differently as a result of having a mom with, uh, ms. And, um, and hopefully, you know, it shapes them in a good way as well as also, um, learning how to deal with adversity.
Speaker 1 00:22:47 Excellent. Nikki, can you talk about, let's talk about statistics. So do you have national and statistics from Minnesota?
Speaker 2 00:22:56 Yeah, the, actually the ms. Society just released in the last few weeks, an updated number of people living with ms in the United States and that updated numbers. Now, almost 1 million people living in, uh, living in the U S with ms. And that is almost twice as many, or it is twice as many as before. Um, the last study was done in 1975, which is almost, you know, 45 years ago, a little bit. And so the number used to be, uh, 400,000. And so the ms. Society invested in this study to really get a better sense of the number of people living with ms. And, and I would say, you know, the, the, it was a very rigorous study. I think it may also be, um, an under count again. I mean, there's only there's limits on what data could used to identify this number. And, but it does give us, um, an even greater sense of urgency around, you know, finding a cure, finding solutions to deal with the symptoms and treatments, all of that, just knowing the number.
Speaker 2 00:24:00 And the other thing that the ms society has worked on is, um, the development of a national neurological disease surveillance system, where, where there would be, uh, data collected around neurological conditions. And so that was passed. It was called the 21st century cure act in 2016 and in 2018, the, um, it was a PR appropriated fund. So it was funded through the CDC or the centers for disease control. And, um, ms. And Parkinson's are the two diseases that they've put to the top of the priority list in terms of starting to track that, and it will really help accelerate our understanding of the disease, meaning are there geographic clusters, um, are there other factors that might be environmental in nature or, um, you know, uh, other things that would just help to gain a little bit more insight into a disease that is just so, uh, so mysterious.
Speaker 2 00:24:55 And so that's really great progress as far as numbers in Minnesota. Um, one estimate is that there's 353 people for every hundred thousand people in the Midwest that has ms. And that's one of the highest rates, incidents rates in the country. Yeah. So it's actually higher in Minnesota in the Midwest, the West and the Northeast are the two parts of the country that have the most, any idea why? So this is, um, it's really fascinating, it's they, they think there's a link between vitamin D and ms because vitamin D is so critical to our immune system. And so in places like Minnesota or Maine, you're not spending quite as much time outside, just look at the nearly 40 inches of snow we've had in February as do I, and, um, and just thought about sunbathing out there, but it's great. So that exposure to, or lack of exposure to the sunlight could be, uh, create, you know, vitamin D deficiencies.
Speaker 2 00:25:54 I know at one point in my, um, history, uh, that my vitamin D level was really low, this was pre diagnosis. So that is one thing that they, that they suspect is that vitamin D piece. And so when you were asking about the genetic, um, genetic part of it, when I was first diagnosed, I asked a neurologist, if I should, you know, make sure my kids take vitamin D kind of keep their vitamin D levels up. And he said to me, you know, my kids don't have, uh, an ms family member, but I make sure they have, you know, 2000 IUs a day or however much it was just that it's just good for good immune system health. And so, and I think just some of this, um, you know, refining the, the system you use to, to track it will just get us even greater insights into it. But, you know, Minnesota is one place where it's, it is really, really prevalent. Huh. Interesting. I did that. I did not know at all.
Speaker 3 00:26:46 Yeah. Is there a gender preference?
Speaker 2 00:26:49 So, um, definitely not a discriminating disease affects everyone, but they do find that it's more common in females. Um, and so they're, you know, more than, I don't know the exact number, but it is more common in women.
Speaker 3 00:27:05 Let's talk about age range. What have you seen or known for this?
Speaker 2 00:27:11 Yeah, so it's typically between 25 and 40 where when people are diagnosed. Um, and when you think about the impact on that population, you know, I, I just met a young woman, um, uh, earlier this week and she was telling me story how much it impacted the direction of her life at the age of 26. Um, so it, it really is often diagnosed at a young age. That also means that you live with the disease for a long time since it's not life-threatening. And so it has a lot of impacts. So it's typically, you know, like I said, like that 25 to 40, 45 age range, um, I know that when I went to see my neurologist, that was one thing that she had said was, you're kind of in this age target, you're a woman. This is why I'm thinking about ms for you. So, um, but there are incidences of pediatric ms. And
Speaker 3 00:28:05 Is that the same as juvenile ms.
Speaker 2 00:28:08 Oh, I haven't heard it referred to as that way, but yes,
Speaker 3 00:28:10 I saw something with that, but it could have been meaning something different, but no,
Speaker 2 00:28:14 Yeah, it's probably the same. It's not very common, but it does, it does happen. There's a lot of exciting research and they actually just approved the first, uh, treatment for, for pediatric ms. Which is great. Um, and so, and then I've, you know, I have some friends that were older in life, so it does range, but that's, it's typically in that younger age.
Speaker 3 00:28:35 Interesting. I would presume that if it's pediatric ms, that somebody gets, that would be a real, almost disaster as far as what, a long time to have to deal with that.
Speaker 2 00:28:50 Right? Yeah. It, it, it's hard, but I, there's a, um, a young woman who has, I'm gonna fail to remember all the details, but she's created a, um, a stuffed animals specific for kids that are diagnosed with ms. And it traveled Oscar and it travels to different ms. Events and you take your picture was Oscar. And, um, you know, it's orange, orange is the ms. Awareness color. And so, um, so I think there's, there's a lot of hope, especially with having a treatment that is now approved for that age range. I mean, that is just so important in ms. So, um, so I think there's a lot of hope and that's one thing that I would say about the ms. Community that is just amazing is you just meet so many people that take the diagnosis and create something bigger than themselves. Like Oscar, you don't have to travel around and is meant to give hope and joy to kids diagnosed with.
Speaker 3 00:29:42 And do you know much about that part of the ms. The treatment with, with, um, kids diagnosed? Like how do they fare and how, how is their journey different as far as like symptoms and things like that? You know, I'm sorry,
Speaker 2 00:29:56 I don't know much about that. So I apologize.
Speaker 3 00:29:59 That's okay. I didn't even, I didn't realize they had that young of, you know, but I guess there's a lot of things that can happen there. So, um, it sounds like, you know, looking at rate of progression, it sounds like, I guess with the four there's four of them, or five, four, four, kind of, we break it down again. Well, I guess not, you don't have to do the first one cause that's a single, but the other three sure. Like what might be the rate of progression? I realize there's going to be differences, but right.
Speaker 2 00:30:37 Um, and so it, it, it is just really different with everybody. Um, and so there are people that, and maybe it's almost thinking about it in terms of an aggressive scale. You know, there are people that have in a more aggressive form of relapsing remitting, ms. So for example, for me, within my first year of diagnosis, I saw an ms specialist and she actually came in and, um, first thing she said to me was you have an aggressive form of this disease and it need to be on a more aggressive medication. So they can kind of look at, um, things like where the lesions are placed. So for me, I had a lesion on my spinal cord, which is, um, impacts the ability to walk a lot more, which they want to try and stop if they can so that you maintain mobility. So there's almost like th there is kind of an unscientific scale of aggressiveness of the disease.
Speaker 2 00:31:27 And whether people with relapsing remitting can transition into this secondary progressive, but they don't know why or how, or if that will happen for you. So, um, I just saw my doctor speak at a dinner event and she was saying, they're trying to do more, um, more research on that secondary progressive, because they'd like to find treatments cause in that case, then your disability level goes up, you know, quicker. Um, and so the progression just is really so, so individual and I, um, I think it just, it, it varies one of the indicators that my doctor has shared with me is how well you recover from a relapse. So for example, for me, um, another quick story, I, um, when I was diagnosed, I just was so determined that I was going to run again, that just became this goal. And so I went to physical therapy, you know, religiously, I just was, and I dedicated myself to that physical therapy.
Speaker 2 00:32:26 I was able to get on a different drug when that doctor said, you need a more aggressive medication. I was put placed on another drug that helps me walk and, um, the kids and I actually kept it a secret from everybody. And I registered for a 5k in June of 2017. So this is about two years after my diagnosis. And the reason I didn't tell anyone else's, I thought if I woke up and I said, you know what? I just don't feel well today because it can be a day by day disease. Right. So if I don't feel well, the kids will be like, yeah, we get to sleep in for two hours. And so they wouldn't judge that. Um, but I was able to do it. I wasn't able to run from, start to finish. I ran maybe half or a little bit less than half of it, but I was running right.
Speaker 2 00:33:08 And I, and I was able to do it. And that was a huge accomplishment. And so because of that sort of level of recovery, my doctor feels really good that my prognosis is good. It's always going to be uncertain. There's always going to be a giant question Mark in everyone's mind, but, uh, including mine. And, um, and I really try, I hope that I don't have another relapse or another, um, event, but, you know, that's one thing that they look to in order to determine sort of how the progression will be for you. Um, so,
Speaker 1 00:33:37 So that, that is kind of your, your ms is that it's, you know, comes and goes so to speak. So you don't, it is really that you don't unknowing.
Speaker 2 00:33:50 Yeah. And it's not, um, as far as coming and going, I mean, I have symptoms every day, all day that will still, there's still here until there's a cure until we figure out how to remyelinate those frayed nerves. Um, it, you know, I will always feel spasticity. So that's where my muscles just feel really tight from my, you know, but my midsection down, um, you know, I, I won't regain full feeling in my right leg. Um, I will always have physical reactions to stress, so I can actually, you know, the numbness and tingling comes back when I am stressed or I haven't had enough sleep.
Speaker 1 00:34:31 I was reading something on that, that stress can kind of impact things.
Speaker 2 00:34:37 Yeah. And it, and the fatigue will be stronger, or my thinking might be a little bit muddier. And, um, so, so it's not, it really never goes away. I think some people have quieter symptoms, certainly. Um, but for most of, uh, most people with ms it's a day by day battle, even when the disease isn't active, isn't actively attacking my immune system. It's still, yeah, it does definitely reminds me. That's a good way to think about it's like, it doesn't go away. Yeah.
Speaker 1 00:35:07 Yeah. That's, that would be hard. And always living with that unknowing would be stress in itself. How did you learn to keep that stress at Bay?
Speaker 2 00:35:18 You know, uh, it's a work in progress and it is. Um, so for me, it's very important that I keep going right. That I do as much of awareness building as I can, that volunteer work that I do with the ms. Society coordinating and the walk ms. Team, all of those things. But I need to learn to say no a little bit more, be realistic. Um, the other thing that has really helped me in terms of the stress and trying to put the ms, you know, I'm trying to kick it out, kick it out of my brain a little bit is just really stopping and noticing that everything that I'm so grateful for every single day, you know, it's listening to my daughter's orchestra concert and the beautiful music it's, um, you know, being able to walk the dog for a couple of miles, you know, all these things that may just their everyday things, but I'm so grateful to have that day, you know, cause it, that day I felt well enough to do those things. And so when you kind of take that practice of, of thinking at the end of the day of, of everything that, that went right, um, than some of what might go wrong, um, isn't top of mind. So that's one way that I've thought about it.
Speaker 1 00:36:35 So let's talk about treatments. Sure. Um, and, and I know you came from a big event, not too long ago, so I don't know how you want to separate that, or if you would want to talk about that all in one. Okay. But you take it away.
Speaker 2 00:36:50 Great. So this is what is so exciting about the ms movement right now in the nineties. The first treatment was introduced in the nineties. I mean, and so there's been ms for a lot longer than that. So, um, that was the first treatment. And thanks to research by the ms. Society, by other researchers, um, through an NIH funding today, we have 14 treatments and most of that growth has been in the last five to 10 years. And so they work in very different ways and, and it's really depending on how your ms is, is going, what the prognosis is, how the Dr. May want to treat it. And it may be something where you start one treatment and it stops working, or it never starts working one of the two. Um, and they, they switch you. But to have that many options is really, um, really amazing.
Speaker 2 00:37:40 And last two years ago, actually the first treatment for primary progressive ms was introduced into the market, which is fantastic because there hadn't been before then all the other treatments were for relapsing remitting. And so to have one for, um, the NS community that is, you know, really, um, impact it impacted the two different degree, have a treatment option is fantastic. And they're making strides and finding a treatment for secondary progressive. Um, now again, these aren't cures, but what they do is really slow the progression of the disease and hopefully, um, prevent future disability. That's, um, that's going to impact you. So, uh, they do help in, in with some symptoms, but really symptoms are managed more with other drugs or, or there may not be anything to address it. But, um, what I am so thankful for is because they have this new treatment that was introduced two years ago, I was able to still stay on a pretty strong medication when I needed to make a switch.
Speaker 2 00:38:42 I had started on one, develop some risk factors for pretty serious side effects. Um, and they were able, there was an option that could keep me at that level. Um, cause I didn't want to take a step down. You know, I said to the doctor, my kids are in the house for at least another four years, you know, and I want to be as good as I am today. Um, as you know, for the next, at least the next four years, if not forever. And so she was able to keep me at that level, which is really great. And so I was at an event this week. We were, um, the national ms. Society held their annual public policy conference in DC. It's the second time I've been honored to, uh, attend this event. And so I was joined by 300 other ms. Activists in, across the country and we talked through different policy priorities to really help advance the ms. Um, ms. Policy's, ms. Research, um, all those things that are just so important. And one of the things that we advocated for was increased funding for, uh, ms, and really just all conditions. So we advocated for an increase in funding for national institutes of health, as well as there's, there's one, um, program that is specific to ms because, um, for NH funding, we really look at supporting everybody, you know, that there's, there's really good benefits from all advances in medical research
Speaker 4 00:40:02 And the NIH does a lot.
Speaker 2 00:40:04 Yes. Yeah. And, um, and so we were advocating for an increase in funding for something called the ms. Research program that actually comes from the department of defense, which doesn't
Speaker 4 00:40:15 Really, I would not have stopped that, but okay. Then connection ms. And veterans, I believe. Yes.
Speaker 2 00:40:24 Yeah. And the recent prevalence study that I shared earlier, where they found that 1 million number that study found there's 70,000 vets, um, with ms. And so that is why they have this con, this ms. Research program for the department of defense. Um, and so it was great. I was sitting in one congressional office and they said, I need to hear about this, um, re ms. Research program, because I was just talking to representatives from the VFW, who said, people with ms are here, you know, advocating for a policy they want to see. So it was great to have that kind of connection on that day. Um, and so the other thing that we were talking about was affordable and accessible, um, healthcare and eliminating surprise billing. So if you go into a clinic and one of the people in the supply chain, the radiologist reading your MRI for example, is out of your network and not covered by your insurance.
Speaker 2 00:41:15 You might get a surprise bill that is a lot higher than you were anticipating. So we'd like to eliminate that surprise billing through greater transparency or some other processes that makes that clearer when you go into a medical facility, especially in an emergency situation when, you know, you're, everybody's having that problem. Yeah. Yeah. Yep. And then the last one, and again, I mean, these, these, um, issues really do, um, go beyond people with ms is increasing, uh, drug prices. And so really looking at, we had a, um, slate of legislation that we were talking with, uh, uh, congressmen about, uh, Congress, men and women about, and that was, you know, around how to reign in, in those prices. Because as I mentioned earlier, people with ms. Live with it for a long time. So have that financial impact and the median price for ms. Medications is over $88,000 a year.
Speaker 2 00:42:07 I take a pill to help me with my walking. I mentioned it earlier, the generic form of that pill is $1,300 a month. Um, you know, and I have employer sponsored healthcare. Um, so there has to be a way to ensure that there are more generics on the market. Um, and just that there's more transparency in why these drugs are increasing in price, especially given, you know, there's been increased supply, if you will, we now have 14 medications, but those drug costs are just going up and the research, isn't what they're investing in as far as we can tell. So what is causing those 10%, 15%, 20% annual increases. So that's,
Speaker 1 00:42:42 And do you want to point out that you are lucky enough to keep working? Yes, sir. People with ms who have to stop work. Right? Absolutely. So where does their coverage?
Speaker 2 00:42:52 Yeah, I mean, there's a variety of, um, insurance options for them depending on their situation. Um, but you know, and that's something that we, we talk about. We always want to touch on all the different types of, of insurance to make sure that people are, are covered and have access to affordable. And especially with drug prices, you know, one of the things that we think about is it's great that there's been innovation and advancement. We want to see that continue, but if people can't access the medication, um, then that, you know, and they can't,
Speaker 1 00:43:23 That's the next thing that needs to be dealt with. Yeah, actually I think. Yeah.
Speaker 2 00:43:27 Yeah. And I think I'm feeling optimistic and I know it's just, cause I've only been back from DC for 48 hours, so that optimism and hope on Capitol Hill. But, um, you know, I think it's, it was, it was an amazing conference. I met a woman who has been talking a lot about Medicare, um, drug pricing, because she had to stop taking her ms. Medications when she went on Medicare due to, it just was not financially feasible. And, um, and she was actually invited to the state of the union by Senator Baldwin in Wisconsin. But Diane said to the group, you know, telling my story, gives this disease a purpose. And so, um, I just, I feel really inspired and excited about the advocacy work that we did this week.
Speaker 4 00:44:04 I have a friend who has ms. And one of her frustrations is that there's some drugs out there that they think are work, but they're so slow to approve them. And they can't be used until the insurance company, you know, cause the insurance company won't pay for them. It's just, it's very, a very frustrating situation.
Speaker 2 00:44:24 Yeah. And oftentimes what happens is the insurance company will mandate that you fail on certain drugs before they'll approve, you know, a more expensive one. And so a lot of advocates because they do a lot of advocacy work locally here in Minnesota too. And I have to give a shout out to any government relations committee members listening today. Cause an amazing group of people that work together to advance some of this and something that we talk about is that decision should be the doctors and the patients, not the insurance companies. And so there's been some, there's been some progress on that. And um, and, and so we have to keep moving that forward. But, um, and I was also a frustration in the medical community as well when a neurologist has that person's brain, if you will, in their hand and there's not time, you don't want, you want to prevent any further degeneration. Right.
Speaker 1 00:45:11 Right. Yeah. Well, you know, sometimes you wonder whose side they're on. Right. So it's been what, five, six years, right. Since your diagnosis, about four, actually four. Oh, that's not even. So where do you, where did you, where do you get your strength that you draw upon? W how do you, how do you feel like you're doing from comparatively speaking from the beginning?
Speaker 2 00:45:37 Sure. I, uh, I feel like I've got a better sense of, of this disease in terms of how it's going to impact my life, um, how to manage it. It's always with that sort of asterisk saying it could change tomorrow. I, you know, but I have to just think about it for today. Um, I draw my strength from, you know, definitely my family and friends who have been so supportive through this entire journey and have really rallied, you know, during the walks with me, um, and, and all of that. And just my kids who re when I'm having a bad day and telling someone, Oh, it's not going that great, they'll say, but remember yesterday you walked three miles. They kind of hold that mirror up pretty close to make sure I'm thinking of the positive things. And I would say, you know, I, I just can't say enough about the positive nature of the ms community and, and the opportunities I've had to interact with people across the country here locally.
Speaker 2 00:46:34 And so I can draw a lot of strengths from them because individuals I meet often are facing challenges that I don't yet don't yet have, or, you know, I'm trying to rent and, and, and just the, the just never ending positivity. And how do we make the best of this situation and make change for everybody? Um, it's just so inspiring. I just, I can't say enough about it. And one of the individuals that spoke at the conference this week said, the reason that he does this advocacy work is he brings the voice of urgency to a community that needs a cure. And so this is this story and, and, and my journey, yes, I want positive outcomes for me, but it's really about making a change for, for the entire ms community. And that feels like something bigger than myself that I can, can draw on and remember, and it's another where, you know, when I was first diagnosed, I just thought to myself, my kids are watching every move I make, and they're, they're going to learn so much in this journey.
Speaker 2 00:47:38 How do I make sure that they learn the positive side? You know, it's not that I sugar coat things, or we don't talk about the challenges or there aren't tears every once in a while, when I'm having a bad day, it's just that, how can we work together with, with other people to raise money for ms or do this advocacy work? Um, and, and they've really gotten engaged in it. So that that's really where the strength comes is, is from that. And just, um, just the, the overall ms. Community and hope. I remember this sounds really silly, but my first ms walk and I really wasn't walking very well. I actually have this good friend. Um, Natalia, she was pretty young at the time. I think she was maybe nine. She held my hand, the entire walk and just looking out at the crowd of people and all the people that were there, supporting people with ms. And just thinking, you know, it's going to be okay. This, that was the moment where I just knew it was going to be okay, that they're going to be tough days, but I was going to, you know, use the muscle memory that I had on how to get out of that, that, that relapse, or that, that bad day where my head's just swirling with all the scenarios. So, um, so yeah, that, that ms. Community is, is a really strong one and very powerful,
Speaker 3 00:48:48 Any words of wisdom to somebody who's newly diagnosed,
Speaker 2 00:48:52 You know, reach out to the ms. Society. Um, and they, I, I unbelievable resource, they have something called knowledge is power, um, where they send true. Yep, yep. They send information about ms, but they don't do it all at once. And it like comes to in, you know, a certain cycle and schedule of every couple of weeks, you might get something about thinking about ms and work or ms. And your relationships, um, and, and just overall ms. Knowledge. And that was really helpful because it's such an overwhelming diagnosis where you just stopped in your tracks and like, what am I going to do next?
Speaker 3 00:49:30 And you think they should do that with all diagnosis, right?
Speaker 2 00:49:33 Yeah. And it just was, uh, it just really helped. And then there's also something called ms. Navigators. And so you can call and they will answer any and all questions. Um, the one that I called her name was literally hope. And, um, and so, uh, and she helped me with some employment, accommodation issues. Um, if you're struggling financially to pay a bill, they will help find resources in your local community. Um, and so I would just say, you know, leverage that national resource as much as possible, and, um, you know, listen to other people that have been on this journey, but, um, honor your own story at the same time, you know, take the lessons that they've learned, um, and, and just see if it fits for you because it is just so, so different for everyone. So just, um, know that I love this line. I learned this week too. I am the leading expert of my ms. And, um, and about, uh, about that. And, and then, and just learn as much as possible and rely on family and friends that want to help. Um, and, you know, they'll, that's, that's how you get through it and, and know, um, that you will
Speaker 3 00:50:40 Get through it. So where can find someone find out more about ms?
Speaker 2 00:50:46 So it's the national ms. Society website would be really great place to start. And I meant to look up the actual address. I'll be far, I came tonight and I forgot. Um,
Speaker 4 00:50:57 But you can Google it, national rice,
Speaker 2 00:51:02 Um, the national ms. Society, or, um, you know, I think I know that my doctor really said, you know, a good resources, always the Mayo clinic is, um, th the information there is really, um, you know, it's verified and, and that's a good resource. And so those are, those are the things I, you know, and I didn't do this. Shockingly, I didn't do a ton of research other than those two resources, just because, you know, what you find, um, could be totally overwhelming exactly. And scary, you know, you might hear something really bad, um, and there, but there are some great podcasts out there. There's one called real talk, ms. Um, run by two people in Ohio, uh, with ms. Um, and some other things like that, that eventually over time, you know, take it and give yourself time to learn, um, and, and cope and, and move forward.
Speaker 3 00:51:52 If somebody is concerned, like if they say, you know, I want to donate or something, but I really want to make sure, like, my money goes to the maximum amount of helping and not paying for overhead stuff. Right. How can they find out how to do that? So, you know, um, I think
Speaker 2 00:52:13 You want to look and kind of look at a track record of an organization. Um, and certainly like with national ms. Society, I mean, over there, the course of the society, they've invested over a billion dollars into research. I mean, they're really a, uh, uh, a private partner, if you will, with the government on, on this research. And, um, and I've asked the question about how much of each dollar goes to research and that's, um, I think it's 83%, or, you know, it's in the, in the eighties and then the other dollars go to services for people with ms. The ms. Navigators, for example. Um, and so I think donating to, you know, finding a team that's, that's walking for walk ms, or other things like that, um, you know, everyone has their own comfort level, but just kind of take a look at the track record and talk to people that are, um, experiencing it, you know? Um, is it really a good resource, for example, um, and see, so,
Speaker 3 00:53:09 Well, Nikki, it's been awesome. Great. You're going to come on in another four years. Right.
Speaker 4 00:53:14 You know what I want to come,
Speaker 2 00:53:15 There's a cure. Can I, can you be like, absolutely.
Speaker 4 00:53:19 We do some marketing for years from the first and tomorrow. Hey,
Speaker 3 00:53:26 I'm feisty. I'll make it happen. Exactly. Anything you'd like to leave us with you talk about that walk when it is again, and how people can, can people still get involved.
Speaker 2 00:53:35 Absolutely. So it's, um, it's free to register and there's no sort of requirement to fundraise to be a part of it. And yes, there's plenty of time to register even up to the day of the event. It's May 5th, um, Minnehaha park and, uh, and you can learn more on the national ms. Society website. Um, and I just, I guess what I would leave you with is just gratitude for a wonderful conversation and thanks for continuing to help raise awareness, um, about ms. Because I think the awareness is what drives the research, but drives the funding. Um, and, and so this is really great that we have this resource in the Minneapolis community. Thank you.
Speaker 3 00:54:12 Thank you for coming on. It's it's people like you that make it work and know that you tell your people pledge pledge is coming up for cafes. So the March 21st and 28th through the, you know, the, for our show anyway. Great. Um, so we, this is how we work. So thank you so much for coming on. We really appreciate it. Thank you, Sam. Good night. This has been disability and progress. The views expressed on the show are not necessarily those of cafe or its board of directors. My name is Sam. I'm the host of the show. Thank you so much for tuning in. If you'd like to be in our email list, you may email me at disability and progress at Sam, jasmine.com, us disability and
[email protected]. Charlene doll is my research woman, and we've been speaking with Nikki foster about ms or multiple sclerosis tonight.
Speaker 0 00:55:07 <inaudible>.
