Jason
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After his diagnosis in 2013 and learning more about MS, Jason traced his first symptom back to 2007. He was an avid runner who ran track and cross-country in high school and college. He recalled falling in some races but brushed it off. He considered himself “an invincible college student” and went on with his life. After he experienced numbness in his left hand, he went to a doctor who told him his symptoms were all in his head after nerve testing came back normal. When he experienced other symptoms such as bladder issues during college, he downplayed them. It was his college girlfriend, who was a nursing student, who suggested he might have a neurological disease. When he began experiencing horrible pain in both his feet in2013, Jason finally saw a neurologist who diagnosed him with advanced MS after an MRI and battery of vision, hand, and walking.
After his diagnosis, Jason began taking both disease-modifying and symptom-management medications. He began with Tysabri but had to stop taking it after testing positive for JC virus. Jason then switched to Lemtrada. After seeing a pain specialist who prescribed Methadone to control his MS-associated pain, Jason’s drugs interacted, and he lost 30 pounds in one week. After the incident, Jason received one more Lemtrada infusion and decided to stop all symptom management medications. Because the Lemtrada treatment was physically taxing on his body, Jason decided to focus on the other things that could help modify his MS symptoms and progression. He changed his diet and increased his activity levels to manage his symptoms. Jason manages his pain by mentally ignoring it and keeping his mind occupied so that he is not aware of how painful just being alive is. As a thirty-year-old male living with MS for seven years, Jason says that he can’t even imagine not being in pain and living his life any differently. Today, Jason’s MS is stable. His symptoms consist of numbness and tingling in his left hand, bladder issues, erectile dysfunction, glaucoma which may be related to his MS, and pain in his right foot that’s a little bit more severe than the pain in his left foot. Jason also experiences a small limp when he walks and a lack of endurance. He uses catheters eight or nine times a day to urinate and a cane when he goes to unfamiliar places or if he is going to be around a large group of people.
After his diagnosis, Jason remembers being all doom and gloom, and felt that his life was over. But after receiving Lemtrada, going through a divorce, seeing a psychologist, and stopping medication, Jason changed his mind set to focus his time and attention on making changes that are good for him, his body, and his “long-term viability on Earth.” Jason implemented lifestyle changes such as being active, learning to cook, eating healthy, losing weight he did not want, and visiting friends in different states. Today, he stays involved with the MS center at one of the local hospitals by availing himself as a resource particularly for younger individuals diagnosed with MS. Jason’s support system consists of a network of close friends. He says that he has accepted the fact that he is likely to die young and therefore focuses on the question “How do I get the most out of the time I have?” Jason’s advice to others is to “become a yes man and just do the things you want to do and figure out what it takes to be happy” even if “you might be in pain all the time and it might be a pain that no one else can understand, that doesn’t mean you can’t have fun and take that pain and make something good out of it, because there’s still a reason to live.” Jason’s MS does not affect his work and even to some extent, helps him to exhibit a level of commitment that other people don’t have because he must work harder than most during his 18-hour days. He hopes his story helps an undiagnosed person recognize their symptoms as MS and get treatment sooner rather than later.
Clinical Trials Experience:
The first clinical trial Jason participated in was a drug trial involving extended-release Baclofen. At the time, Jason was taking Baclofen three or four times a day and the opportunity to take it once a day motivated him to sign up for the trial. After six months, Jason informed the study team that he did not notice any change and chose to withdraw from the trial. Since then, Jason has participated in a couple of research studies, one of which involved completing a survey upon entering and leaving the trial as part of the control group. Jason also participated in another research study that aimed to research how increased activity could affect one’s outlook on MS. In this study, Jason took a survey at the beginning, talked to an activity coach throughout the study, and completed a survey at the end. While Jason hopes that the research team learned something from the trials, he did not think the studies were useful for him.
Jason’s main motivation for participating in the study was taking advantage of a chance that this could help him manage or treat his MS. While Jason is very interested in knowing the findings of the studies and has asked the study teams to provide him with a copy of the results, he has not received any information as of now. Thinking back on his previous clinical trials, Jason participated with the expectation that he would get something out of the experience, but not knowing what that something was. Now, Jason has shifted perspectives and expects to get nothing out of his research trial experiences. He simply participates in the hope that somebody else will benefit.
Jason brushed off many signs that he had MS
Jason brushed off many signs that he had MS
I was diagnosed in 2014. And after learning more about the disease and what the symptoms are, I've traced my first symptom back to the fall of 2007. I used to be a runner. I would run-- I would do sprint. I ran track. I did the 400-meter dash. And then I also ran cross-country. And I'd done that for a few years. I wasn't an all-star athlete, but it was something I enjoyed. And I remember pretty vividly the-- in fall of '07, I fell while running. And it was not normal. So, I brushed it off like, oh, I fell. Oh well, people fall when they run sometimes. Then, fast forward about one year, fall '08. I was running in an intramural track meet in college and I fell during a 400-meter sprint, which was also-- that was really shocking to me. It was like, OK, now that's really weird, because I wasn't even running-- I wasn't running five miles. I was running a quarter mile. So that was weird. But again, I was an invincible college student. Nothing could hurt me. There's no way I could have a disease. There's no way anything could be wrong with me. So, I brushed it off, went on with my life.
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And then I know a girl I dated in college was studying to be a nurse. And she had to do a video clinical, like physical on a person. And I was her patient. And when she did my Babinski reflex, it was the wrong-- whatever I was supposed to do, I did the opposite. And she was like, “Oh, that's weird. That's a sign of a neurological disease.” And me being 20, 21 years old, was like, there's-- not possible that I have a neurological disease. Like, my mind works fine-- other than understanding the central nervous system and how it works. So, there were tons and tons of signs.
Jason worries about his life plan and his future as a dad.
Jason worries about his life plan and his future as a dad.
When I was diagnosed. So, at the very beginning I was newly married. I was at the point where-- so when I got married, I wanted to have kids. I wanted to start a family and be a dad and do all the things dads do and just be the average I go to work, I come home, I take care of my kids, I go to work-- just beyond the hamster wheel, if you will. Well, now I have this chronic disease. What does that mean for doing all the things dads do? I might not be able to play catch. I might not be able to-- if they want to go camping or hike a mountain trail, I might not be able to do that. When I have a newborn, am I going to be comfortable holding them while walking upstairs? It was worried about that type of stuff. How does this change the plan I had for my life?
Jason thought physical therapy might be helpful but didn’t make it a priority.
Jason thought physical therapy might be helpful but didn’t make it a priority.
I think part of the reason that it wasn't-- it didn't really resonate with me is because I went in there without goals. I thought it would be like a magic bullet. Like, if I do this thing, I'll be able to walk fine. And that didn't happen. And it's probably more on me than on them of doing it without a goal in mind or doing it without a reasonable goal in mind. But I just kind of did it. I don't know if it was something to do. I don't really remember. It was-- I'm not going to call it a mistake, because I did learn the exercises that I should be doing. And every once in a while, I will-- I still do stretch quite a bit. And I learned those stretches in physical therapy. So definitely not a complete waste. But I think if I were to redo it-- well, I wouldn't redo it right now. I just-- I don't have time. I wouldn't make it a priority. And that is a problem. But if I were to redo it and make it a priority, I think I would have a much different focus. And I would set more realistic goals. And I would communicate those upfront, of, during this six-week program or eight-week program, this is what I want to see. Here's my baselines. This is where I want to improve. And this is where I want to get to by the end of this.
Jason says his healthcare providers “were not thrilled” when he wanted to discontinue treatment.
Jason says his healthcare providers “were not thrilled” when he wanted to discontinue treatment.
INTERVIEWER: So, with your care, like your medical care team, when you made this decision to stop all your medications, what was their involvement and input in response to that?
They were not—they were not thrilled. I don't really remember—I don't really remember how it all happened, but I remember being in the hospital because my drug interactions were so severe that I needed to be admitted. And then I remember on, like, day two I was like, this is what taking drugs causes. I'm just not going to take drugs anymore. And I have a feeling—and I guess I could—I can go back through my medical records. But I have a feeling there were some drugs that I had to titrate off of and others that I could just stop altogether. But I think once I explained, “Look, this drug isn't working,” they were like, “OK, well, let's figure out the safe way to get you off of it.”
Jason is shocked by the costs of MS treatment and care.
Jason is shocked by the costs of MS treatment and care.
And I spend-- I think the catheters that I use are-- I spend $300 a month on 270 catheters. That's after my insurance benefit. Before my insurance benefit I don't even-- I don't know how much it would cost. $1,000, maybe? I don't know. It would be [astronomical]-- I already think it's too expensive. But it would be more expensive. My MRIs-- I get an MRIs in January. So, it's generally before any deductible or anything has kicked in. And those MRIs are usually $1,500 to $1,600. And it's really expensive. The only thing saving me right now is that I'm no longer taking a disease modifying therapy every year, because I had two years of a $300,000 drug. But I know when I was on Tysabri®, it was $16,000 a month. That was the before-insurance price. And it's just-- I don't know. It blows my mind how expensive this stuff is.
Jason can accommodate his symptoms while staying active.
Jason can accommodate his symptoms while staying active.
So, anything that requires a lot of standing, walking, end-- any type of endurance in that arena-- those are probably the biggest things that I'm-- I can't do. I used to love tailgating for football games and then going to football games, but I'm not able to walk from the tailgate to the game. So, if I'm going to tailgate, I'll tailgate, and then I will drive to a bar and watch the game. So, I don't know, I feel like I'm pretty good, or I've done a good job of figuring out how to do the stuff I want to do working around the MS. Now, I'm never going to climb a mountain. That's probably not in the books for me. But that's OK, because I don't really like nature or mountains. I'm definitely a-- if I don't have 5G's on my cell phone, I'm probably too far out of a city.
Jason’s employer looks for ways to help him.
Jason’s employer looks for ways to help him.
But yeah, I'm very open about it. I know my employer, they're like-- when they found out about it, they were like, “How can we help you? How can we help you manage your disease while you're working for us?” But there's really-- at least, I don't know of anything they could do differently. They're flexible. I know most people don't work on Saturdays, but there was one Saturday I had to go to the ER because my symptoms flared up, and I was like, “Hey, I know I had this meeting scheduled today but I'm in the hospital. Let's reschedule.” And I'm 100% certain that some people would get mad if that happened. And my bosses were both like, “What can we do? How can we help you? Do you need a ride? Do you need a place to stay?” Because we thought-- well, I thought I had COVID. And they were like, “Do you have somewhere to stay?” So, it really hasn't been-- professionally, it hasn't been an issue.
Jason prioritizes being open and upfront about MS when dating
Jason prioritizes being open and upfront about MS when dating
Oh, just, hey, I have-- so dating, it's more like, “Hey, my name is [NAME]. I have MS.” Because there's not really-- unless the conversation steers it in a way where it naturally comes up, there's not really a good way to bring it up. And I used to not-- I used to not bring it up and just let people ask when they see me walk, but that's kind of awkward, too, because it's like, well, why wouldn't you share that? Because it can absolutely change someone's opinion of you. And not everyone knows what it is. But the people that do know what it is, especially if they-- like, if I meet someone who also has a chronic disease it's like, all right, is there really a future here? Do I really want to put myself in a situation where I'm managing this and they're managing their thing? So, I get it. It can definitely be a negative. And I'm OK with that. I don't want to spend time with someone who isn't comfortable being around someone that has a chronic disease. So, it's just easier to get it off the table. Just like there's the things that you don't bring up on a first date like politics, religion, kids, whatever-- I bring all that stuff up, because if there's no-- we're not compatible on the things that are important to me then there's no reason to meet in the first place, because I don't need to waste my time with you. Not to be arrogant, but I value my time. I work like 80 hours a week, so the time I spend not working is very valuable to me. So, yeah, I think it's just being honest. And I feel like if I'm honest about that then at no point is someone like, well, what is he lying about? Like, I hold myself out to be a very high integrity-- maybe not high moral character, but at least I'm not going to tell a lie. And if you can be honest about the shit in your life then people are more comfortable that you're being honest about the little things, I guess. That's why even with my clients, when it gets brought up, I tell my clients that I have MS. And I-- I don't know. It's just, it's something I'm very open about.
Jason reevaluated what it means to be a parent given physical limitations.
Jason reevaluated what it means to be a parent given physical limitations.
When I was diagnosed. So, at the very beginning I was newly married. I was at the point where-- so when I got married, I wanted to have kids. I wanted to start a family and be a dad and do all the things dads do and just be the average I go to work, I come home, I take care of my kids, I go to work-- just beyond the hamster wheel, if you will. Well, now I have this chronic disease. What does that mean for doing all the things dads do? I might not be able to play catch. I might not be able to-- if they want to go camping or hike a mountain trail, I might not be able to do that. When I have a newborn, am I going to be comfortable holding them while walking upstairs? It was worried about that type of stuff. How does this change the plan I had for my life?
Jason has emotional ups and downs.
Jason has emotional ups and downs.
Really, the only thing I can think of is diving deeper in the mental state of mind during these various phases that I feel like I went to, like the beginning versus when I got off Tysabri© and onto Lemtrada©, and where-- the point where I think I was at my lowest versus where I am now, where I'm not really-- I wouldn't say optimistic about the future, because I'm not really thinking about the future, but optimistic about my present in that if I do everything that I want to do today, then when I get to the future I won't have regrets about the past. We may have been able to talk a little bit more about just the mental state and the thought process and what I was thinking. But I do-- maybe we did talk about that. I don't-- I don't know. Because I do-- I definitely think it's interesting how what I was doing in life affected my mentality at different points in my MS journey, because it went from worried about the future to just didn't care about anything in that real low point, and then up out of that by changing my-- completely changing everything about my life and figuring out what it takes to be happy and how to be happy with MS and how to do what I want to do, to now making sure that every day I do the most I can do to live my best life.
Jason tries to get the most out of life while he’s young.
Jason tries to get the most out of life while he’s young.
I've kind of accepted the fact that I am likely to die young, which is fine. I am living my life in a way where if I die when I'm 68 I know I will have lived the life I want to live. That's really the biggest thing that worries me, is that I have two chronic diseases, so my life expectancy is probably shorter than average. So how do I get the most out of my-- the time I have? And that's also why 2020 has been the perfect time to just push myself-- like, kill myself for a career, because I haven't really had the opportunity to safely do the things that I want to do anyway. So, I might as well get ahead at work and make more money so that when I can do those things, I have the money to spend on whatever I want.
Jason encourages people to not care so much about what others think.
Jason encourages people to not care so much about what others think.
You have to accept it before anyone else will. You have to get comfortable with it. Once you're comfortable with it, life gets a lot easier, because if you're trying to-- if you're trying to hide this portion of yourself, this part of yourself, you're hiding something so significant that you're going to make life difficult. Because I used to not want to talk about it or tell people about it. If you're like me and you physically-- have something that's physically-- that shows physically, you can't hide that and see people. So, I was just holed up in my house all the time. I was being a hermit, and it was awful. It was terrible. So, if you can accept what's going on to you, you're 10 times ahead of where you could be. It's going to make your life so much more enjoyable if you can accept it. And then other people probably don't care about it. You might think they care, but they don't, because you're not actually important, even though we like to think we're important. That would be my message, at the end of the day, it all doesn't matter because no one cares. And you have to focus on yourself and living the best life you can live.
Jason advises people not to over-accommodate.
Jason advises people not to over-accommodate.
Don't be over-accommodating. You might think they want you to do whatever you can do to help, but in reality, they probably want to be able to prove that they can still do things on their own and they don't have to rely on you, because more likely than not, they don't want to be a burden to you, and they feel like a burden every time you offer to help. Be there for them if they need help. If they ask for help, help them. But don't always offer to help, because you're probably hurting them more by offering than just letting them do it themselves.
Jason compares his relationships with his neurologist and primary care doctor.
Jason compares his relationships with his neurologist and primary care doctor.
So my neurologist, he is very much he's old school, traditional, tell it like it is, don't beat around the bush.
You know, he's, when I was fat. He wasn't afraid to say, Hey, you're fat. It's not good for MS.
Lose weight. And he is, he's very, you know, terrible bedside manner. But that's, but I'm not looking for a friend of my neurologist. I want him to tell me, is my disease getting worse? Am I stable?
And I think he's one of the best at that. Now I am switching off of him, but that's because he's like 73, not because I don't think he's good, he's just old.
And I want to start building a relationship with someone that's gonna be around longer. My primary care is much more, much better bedside manner, much better. You know let's look at your labs, let's see where all of your cell counts are.
And you know, she's more of a, well, last time you were here, you weighed 160 pounds. Now you're up near 180.
What's going on? How do we change that?
Because you should change that. Um, but she does it in not a mean way. It's always a Yeah, you're right.
I don't know. I don't know how she does it. She's great. She's like, like I would go out and drink a beer with her because she can just talk about whatever. And she's able to bring her, she's able to make medicine relatable and talk about, you know, her experience with whatever it is. Um, I think it also helps that her sons are about, about my age.
They're a little bit younger than me, but they're still in the let's party all the time. Mindset.
So we can relate on that.